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Spouse or Partner Caregiver Forum
Taking Medical Trip 5hrs away
Thank you for your reply.
He wouldn't let me go out of town without him.
His kids live out of state.
Apparently, ttests are going to take all day. It wouldn't be a bad idea to have someone hang out with him (keep an eye on him) while I have the tests done.
How would I find a private care giver? Visiting Angels? I don't know what I'm going to do if I have to be admitted.
The trip is this coming week.
I don't have power of attorney.
I keep his kids informed of what's going on and how he's 'slipping'. They understand that I'm at the point I need help.
We're all new to this and we're not really sure what to do.
His kids will be coming for a visit in a couple of weeks.
I don't know what to do if I have to be admitted to the hospital.
He'll need a little help and supervision - especially in a strange place.
If you are both in a strange place, and you have to be admitted to the hospital, that leaves him all alone in a strange place. Apologies for being blunt, but as the spouse/caregiver of an Alzheimer’s patient, I do not have words for how frightening this sounds. Even if you can afford an agency caregiver, would they stay in a hotel with him 24/7 in those circumstances?
Keeping an eye on him for 5 hours during your tests is one thing, and probably do-able. Watching him for days in a motel is very different. You need to tell the kids what’s up, and that you could be admitted.
If he got “weird”, and you are not around/not available or incapacitated, plus you have no power of attorney, things could get seriously weird, in a really bad way for him. Many PWDs ability to function declines sharply in a different place.
Many agencies are short-staffed now, all over the country. Getting the days and hours you want, especially on short notice, can be almost impossible. Maybe one will, but you should start trying now to find out. I would definitely contact the hospital to see if they have help for this situation.
He may well not like being left at home, he might be angry about it, but that could be better than the alternative. Better a caregiver at home, or a short stay in a facility, than in a hotel while you are in the hospital. Even if he was allowed to visit much, how could you watch and care for him from a hospital bed?
His kids might have to step up and care for him sooner, home or there. I would call this an emergency, and their presence is needed now.
Did you ask the doctor if there was another closer place to have the testing done? Best of luck to you. Check back in when you can to let us know what's happening.
The hospital wasn't any help.
The kids will have visiting Angel's visit with him in the waiting room during my tests.
I don't have anyone to stay with him at home.
The kids and I are trying to figure out what to do if I get admitted.
Are there adult sitters who could stay with him at home?
Wilted… you describe the PWD as your ‘friend’ in this post, but you describe him as your partner or spouse in your profile. If you two are in a civil union or a marriage, I think you have more rights than if you have no legal or formal relationship. If it’s the latter and you don’t have a POA, you are going to need to get his kids involved sooner rather than later. If you are admitted, sooner is probably going to be now. I am totally ignorant of what you can do in this situation other than call a care agency since my parents are in an ASL. Dads been either in the hospital or gone overnight three times already, and Moms’ been safe and cared for at the ASL each time, it’s part of why I want them there rather than on their own.
We had a medical crisis prior to that and needed emergency overnight babysitters. It was $170 a night and we gave up after three nights because my parents wouldn’t cooperate. In fact, they either refused to admit them or asked them to leave on nights two and three.
Bluntly , very bluntly. I don't see any spouse in your profile I am their partner or spouse tells us nothing
If you are not a spouse and he will not give you adequate legal authority IT'S NOT YOUR PROBLEM
He wouldn't let me go out of town without him. What does this mean ? You are not a pet or a possession Does he think of you as an obedient servant?
You are in a disposable position. you need hard headed advice NOW
I'm not a pet or a servant, lol. He's clingy. He worries when I'm not around. When ever I go someplace, he wants to tag along
I'm hoping to learn from the experience of others here.
Thank you all for the input so far!
Dear Wilted, I am sorry this is happening. The realiity is; that if you get admitted to the hospital and must be there several days or even one day, trying to have your friend cared for in a strange hotel with a strange carer, may well lead to some unforeseen problem issues not so easily solved. Maybe it wouldn't, but it is a very high risk. Have you thought of some respite days in an Assisted Living setting? Not the best choice, but what seems a safe choice.
If you get admitted and he is not able to tolerate the hotel; or if the aide who was hired tirns out to be highly substandard and problematic him or herself, then his kids would have to drive in under emergency circumstances with no preparation while under severe time constraints.
If you can work this out prior to your testing day, that would be far more sensible and leave a margin of safety.
May I ask what kinds of tests you are having? If you are going to be sedated, you will not be permitted to drive; may have to call an uber or taxi to a hotel. . Then five hours home from a hotel the next day? That is certainly not sounding very comfortable.
You can also call the Alzhemer's Assn. 24 Hour Hotliine and ask to speak to a Care Consultant at (800) 272-3900. There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics and are very supportive, often have much information and who can often assist us with our problem solving.
I do wish you and your friend the very best and hope it all works out for you; but as we here all learn, it is always best to have a, "Plan B," in mind just in case things to not go as we hoped or expected. Let us know how it goes, we will be thinking of you.
Thank you for your well-wishes
I have a taxi lined up.
One of kids will fly down and stay in the hotel with if I get admitted. Yay!
Clearly you are worried on multiple levels about multiple things. It is good you are getting yourself and your medical issues looked at / taken care of. Why won't at least one of his adult children come & stay with him at your house? Frankly that's the best decision. Doesn't matter that its inconvenient or whatever excuse they'll use - you need them to do that. Their father needs them to do that.
In your heart you want everyone happy, I so totally get that. However, as you are experiencing life sometimes changes things. Of course he likes being with you - your his safety person. But that doesn't mean one of the adult children can't help out in an emergency.
I'm afraid your going to have to be bold and simply tell them "this is what I need you to do." Them arranging care isn't solving this immediate problem.
None of us wants to be hurtful to you - in fact its just the opposite. We are trying to help you. We're sharing what we know would be best for the both of you. Let us know what you decide and I certainly hope your appointment goes well.
It is definitely clingy, not control.
I do have durable power of health attorney and durable power of mental health attorney.
He doesn't understand how much help he really needs, and he's not ready to give up full control. I always get his consent for EVERY decision that needs to be made on his behalf. He should have the dignity of feeling like he has a say over his life.
Being responsible for another person while getting medical testing and possible hospitalization is just not reasonable. Your friend needs full care lined up.
I have to split my post.
This sounds like shadowing, which is very common.
He doesn't understand how much help he really needs, and he's not ready to give up full control.
This sounds like anosognosia.
I always get his consent for EVERY decision that needs to be made on his behalf.
If he does truly have dementia, this does not sound rational. If he has some other condition, then carry on.
He should have the dignity of feeling like he has a say over his life.
What about YOUR life?
He was diagnosed with moderate to severe dementia. No alcohol.
During a particularly bad week, he put his pills in the full glaas of water, tried to cook food on a paper plate over a gas stove. He will get a fork to eat soup. He doesn't know the names of appliances. "Get the spoon out of the dishwasher", or "it's in the drawer next to the oven", is completely lost on him.
If the diagnosis is moderate to severe dementia, then he has lost the capacity to make good decisions. And the behaviors you describe certainly suggest that.
You have an immediate crisis to solve—how to ensure he is cared for while you undergo important medical tests and possible hospitalization. It sounds like you’re making good progress to a workable solution that assures his safety and allows you to focus on your issues.
But beyond this situation at hand, you will need to reconsider seeking his consent on every or even most matters. Dementia in any form is incredibly undignifying in ever so many way—inappropriate comments, incontinence, dressing and bathing challenges. It’s a very sad reality that it will be impossible for him to have a say over his life. It’s like that line from the film Casablanca: you’ll have to do the thinking for both of you.
I appreciate everyone's insight! Thank you.
This is all so heartbreaking but it's reality.
One of his kids will be coming down if I get admitted to the hospital. She may stay with him at the hotel or fly him to her house. He'll be with family either way.
We'll have to have a heart to heart talk about what's best for him.
Murphy's Law says anything that can go wrong will go wrong, at the worst possible moment. In your shoes, I would act as if I will be admitted to hospital and arrange for my LO to visit his daughter instead of accompanying me. I advise this for his benefit and yours.
My mother is mild to moderate dementia. I know what that’s like, I know how other posters describe living with a person with moderate to severe dementia. I read what you wrote your partner did during a bad week,
Your partner should not have access to a stove or a lot of other things, your partner is no longer capable of giving consent. Asking someone with severe dementia for their opinion or consent isn’t being dignified .,,. It’s putting them in control of things that they no longer have the capacity to choose safely.
You obviously do not want to be the decision maker. So give up deciding and turn his care over to his children. Who need to be brought up to date on the facts of life. Exactly when will the flight his daughter chooses be once you are admitted? The next day or the day after?