Taking Medical Trip 5hrs away

Wilted

My doctor is sending me 5 hours away for medical tests. The tests will take all day. Nurse says there is a possibility that I will be admitted to the hospital for treatment. My friend is pretty much functional but he does some really weird things once in a while, so I can't leave him at home alone. 

Is there someone who could stay with him at the hotel while I have my tests?

What options do I have if I'm admitted into the hospital?

Cynbar

You could probably hire a private caregiver to stay with him for the day. Contact a social worker at the hospital you are going to, they will have a list of private care resources. It will be harder if you are admitted, although I suppose you could discuss that contingency with the private care agency.Is there no one at home who would stay with him? Do you think it might be a good idea to arrange a respite for him at a facility back home? Most have a minimum stay (it was 2 weeks when I sent my DH to respite ) but of you are having medical issues, it might be a nice break for you.

Wilted

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. 

M1

Wilted, can you call his kids and give them a heads up of the possibility? You are essentially doing them a favor if you are caring for him. Do you have power of attorney for him? If not, they likely have some responsibility if they are next of kin. Good luck, when is this supposed to happen?

Wilted

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. 

Rescue mom

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. 

Cynbar

Call the hospital you might be admitted to, and ask to speak to their social worker. She should be able to assist. The normal protocol if a caregiver is taken to the hospital suddenly is to bring along a person who can't be left alone. Then, the hospital makes arrangements for care --- so they should have some experience with this sort of thing.. They know the resources in their area. Be aware however that you will be expected to pay for anything they arrange.

Ed1937

Rescue mom wrote:

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.  

That is exactly the reason I'd try to keep him at home with supervision, if at all possible. He might not like it, but it would likely be best for both of you.

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.

Wilted

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?

Quilting brings calm

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. 

Wilted

He doesn't have alzheimers. He has unspecified dementia. He likes going on adventures.

Crushed

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  

Wilted

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! 

Jo C.

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.

J.

Crushed

Wilted wrote:

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 trying to be helpful  clingy is very common. But when its a person who will not give you legal powers its a form of control.   

 

 

harshedbuzz

Wilted-

Yes. If the tests are truly time sensitive, you need to put you first. You can not continue to be whatever it is you are to him if you can't take care of your own medical needs. One third of caregivers die before the person for whom they are caring- don't be in the unlucky group. Especially if you are not so important to him that he has not trusted you to be his POA and act on his behalf in a situation like this.

This is not an adventure. Your friend's children need to hire 24/7 home health aides from an agency as there is not likely time to find and vet people independently before your appointment. Alternately, they may want to consider a respite stay in a MCF or coming to stay with him themselves. 

Depending on where you are, it may not be possible for him to accompany you in the hospital. Or he may allowed to stay so long as he can follow their rules. He be asked to leave if there are rules in place around distancing or masks with which he would need to comply 100%. I would have a real concern if security asked him to leave in an unfamiliar city. 

My mom had 2 hospitalizations in COVID-times in 2 different states. I was allowed in the hospital for her heart surgery but was confined to a single family waiting room until she was given a room in the CCIU at about 6pm. I was allowed to visit each day, but could not come and go as I pleased. The second surgery was same day and after I was fully vaccinated by then; I was able to escort her into the ambulatory surgery intake to hand her off and was asked to leave the premises and not come back until they called me some 5 hours later. 

Has the nurse who did the scheduling talked about whether you'll be up for providing car after the tests and/or potential treatment?

Good luck. I hope you can find a way to meet both your needs in this, but if not, you need to take care of you.

HB

Wilted

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!

eaglemom

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.

eagle

Wilted

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.

Stuck in the middle

Like everyone else who owns fire extinguishers and smoke detectors, I believe in preparing for the worst and hoping it doesn't happen.

In your shoes, I would plan on being admitted to hospital.  I would arrange for someone else to water the house plants, feed the cat, and take care of my LO.  I would not take him with me, under any circumstances.  He is better off at home alone than in a hotel alone, if it came to that.

If he can't be safely left at home, I would flatly demand that his kids come take him to their place for a visit, and tell them you'll call APS if they don't.  He is far better off couch surfing at his kids' homes than on his own in the city where you're being tested.

Good luck with your tests.  

dayn2nite2

Wilted wrote:

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.

And you have the right to receive medical care without this person with dementia tagging along and causing you to make arrangements for him.

Leave him at home and have his children deal with it.

jfkoc

I think it would be reasonable to tell his children that they need to take care of their father and give them the dates or postpone your medical care for when they arrive in a couple of weeks.

Being responsible for another person while getting medical testing and possible hospitalization is just not reasonable. Your friend needs full care lined up.

Iris L.

Wilted wrote:

. My friend is pretty much functional but he does some really weird things once in a while, so I can't leave him at home alone. 

This is so vague.  Does he have a diagnosis of dementia?  Is he an alcoholic?  What weird things?

 I have to split my post.

Iris L.

Iris L.

Wilted wrote:

It is definitely clingy, not control. 

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?

Iris L.

Wilted

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.

Ed1937

Wilted, you have received several posts from the other members here. Every one of them is trying to be helpful, and make it as easy as possible for both of you. You really shouldn't have the responsibility of another person when you are trying to get health care for yourself. That's just too much to expect. Please reconsider finding a way to leave him home. He might not like it, but again, it is probably best for both of you. And he will likely do much better in a familiar place that he recognizes.

Wilted

Thank you eagle mom!

Iris L.

Wilted wrote:

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.

These are not "weird" for a person with moderate to severe dementia.

He should not be using the stove at all!  The main website has a good home safety section at alz.org.

Iris L

Jeff86

Wilted wrote:

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.

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.

Wilted

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.

Paris20

Dear Wilted-One thing you learn after dealing with a loved one who has been diagnosed with dementia is that logic and rational arguments are useless. There is also a condition known as anasognosia. My husband, who has Alzheimer’s, definitely falls into that category. It’s an inability to understand, believe, or accept a medical diagnosis. This sometimes puts the individual in danger because he thinks he can do everything and yet is losing the ability to do anything. They must not be left alone. Waiting until you are in the hospital is not a good plan. You will have enough stress just to take care of yourself. Tell his children to come to their father’s home. Do not travel with him. You already have enough on your plate.