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We are having problems with outings. My Dad has Alzheimer's + Afib and his diagnosis seems to place him on the high side of moderate to low side of advanced. Somedays he is really good, some days not. Eves are much harder and we know that is normal. Usually days are not so bad so we schedule outings early in the day. Today he had a Dr. apt and the Dr. wants to add a med that can be risky, so he wanted the POA and family to weigh the pro's and con's, well dad was very angry after. He thought he should have been allowed to make that choice then and there himself. He screamed at the caregiver about being treated like a baby all the way home and he slammed the door on his finger, sending him to the ER to have it cauterized to stop the bleeding. This is not the first time he has melted down due to an outing. Sometimes it's in the middle of store. It can happen mid trip to after he gets home. We are trying desperately to keep him in his home as long as we can but these kinds of behaviors are making it increasingly hard. He can afford good care, but he wants to be home so we are trying. Is this typical, and if it is why? Is his brain more taxed and more tired? How can we help minimize the impact on him and US..... :(

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Your dad may have aspirations of outings that he isn’t able to actually handle when he gets out. Perhaps just a ride would be more pleasant for him.

Ask his doctor about a light anxiety tablet to take when going out. I joke that I give my aunt half and I take the other half and we have a nicer time. Since she seldom goes out it’s not a daily pill. Just as needed.

Do try to include your dad in all discussions with his doctor. Most of us want to be treated with respect and doctors sometimes are very aware of the clock but will generally follow your lead. If you include dad in the conversation, they are more inclined to do so as well.

Once he gets upset, he may not know how to get his emotions back in check. Suggest a treat or other simple activity that might distract him from his upset.

That sounds so awful about his finger. For all of you.

Try watching some Teepa Snow videos on YouTube if you haven’t already checked her out. You might find them helpful.
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ToniTired Feb 2021
Just watched one of Teepa Snows videos. OMG what great knowledge. I was thinking of sending them to my kids and grandkids in case I ever have dementia. Everyone should learn from this knowledgeable person. I am beyond impressed. Thank you.
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Whoa--this is a new one.

Does dad HAVE to make 'outings' beyond Dr visits, which are probably necessary for him to do in 'person' despite COVID.

If he gives you no clues as to when and why he's going to lose it, then taking him out would be fraught with stress and even embarrassment.

Yesterday sounded like an awful day---I know when taking mother to the ER for her frequent UTI's, she can get really crabby and loud in her complaining, but she can still be talked off the wall, so to speak. Sounds like with your dad, it's a new experience every time you take him out--and for whomever has his, that must be taxing.

Personally--if his wishes are to remain home, then keep him HOME and forget about 'outings'. You probably feel better about taking him out, but sometimes, elderly folks really do not want to go anywhere. Literally.

My mom is 91 and has not had her COVID vaccine. I was on her yesterday--she should have had BOTH of the shots by now. She hemmed and hawed as to why she hadn't pushed her CG (my brother) into getting this scheduled and done. (He's an EMT and has had both a long time ago.) I said "You WILL NOT be allowed back into your beloved Sr Center until 2 weeks past your 2nd shot--you LIVE for your 2 days a week at the center--what's going on here??"

Digging deeper into this I realized she DOES NOT want to go back to the Center. She's had a very bad year (haven't we all??) and she doesn't look very good--and she's gone downhill a lot, mentally and physically and she won't be the belle of the ball anymore. Truthfully---the activities at the Center are beyond her ability to enjoy and she knows it. Staving off the vaccine is all that's keeping her from returning and I wouldn't be surprised if she manages to never get it and always have a reason to NOT get it.

Sounds like your dad really doesn't have the mental capability to handle the stress of a change in environment well. If he is happy at home, let him stay home. Find things to do at home that he enjoys. I told mom she didn't have to ever leave her apartment again if she didn't want to and nobody would try to make her, but please get the vaccine for those of us who visit her, if she won't get it for herself.

You said 'he can afford good care, but wants to be home, so we are trying...' if you are hauling him around on outings, you're not making him happy. And yes, making something as simple as a change in location from home to a local restaurant can cause a lot of stress for people whose minds are already stressed with just trying to think.

When I am having a 'bad day' just going to the store is daunting.
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MickiLyn Feb 2021
The "outing"was a cardiologist apt and he begs to go to the store once a week so he does want to but you may be right he might not be able to handle it once he is out. I wish I understood better, but the truth is I don't. That is why I ask if others have had this... If we can't handle his DR pats to the point where it ends in a broken bone and 5 stitches, just out of the ER in the last hour or so, then maybe he needs a legit pro all the time vs us family taking turns as caregiver. It's just hard to fathom giving up on him now of all times. If he goes into a home he won't even be allowed visitors.
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Yes, it probably is stress and fatigue; your father then has no (or fewer) social filters helping him restrain his emotional reactions to anything that irritates him.

Does he or would he agree to sit in a wheelchair when he's required to be out-and-about for any length of time?

I also award zero points to that doctor for not placing your father at the centre of his own decision-making circle. Yes, formal consent has to be given by your father's proxy or MPOA if your father no longer has mental capacity; but this is his health and as a matter of courtesy his voice and his status should be respected. I'm not surprised that the doctor's lack of consideration triggered angry behaviour.
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My experience with my Mom, who has moderate dementia, is that any change in routine brings on anxiety and what are called “catastrophic reactions”. These are huge reactions to any kind of challenging situation.
Your situation today may be similar.
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Midkid58 Feb 2021
CXmoody beat me to the thought of not 'catastrophizing' events. My kids say that to me all the time.

Having heard all 5 of them say this to me makes me think I do indeed tend to do this at times.
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tell doc that dad needs video conferencing since covid... since covid is still a high issue, dad cannot go on the routine outings to store etc...
he can choose and tell you what he needs at store..
doctor can schedule his appointments online unless something unusual is occurring to him physically.
other than that, make sure he has his favorite music, food, movies etc.
do not take him on outings...
if he asks why can't he go out... tell him,,, ... Dad it stresses you out too much,,, doctor says take a couple weeks off to re-evaluate your stress hormones. ????
OR:; doctor says covid is too much of a high risk,,,, best to stay in place.... home...
has he been vaccinated yet for covid? If not, tell him he has to wait for the vaccines to take effect...
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MickiLyn Mar 2021
Unfortunately this particular appointment was to determine if he had A fib, which his primary felt he heard. The Cardio did confirm that. I don't think they could hear his heart over a computer monitor. BUT I do like taht idea when it can be applied.
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As for shopping trips, if he really wants to go, I suggest small mom and pop shops. Let him make some choices ie: “Do you want chicken soup this week or vegetable?” “Do you like the paper towels with the flowers or the fruit?” Keep the trip short and sweet and do the rest of the shopping alone or online. The longer you are in the store, the more likely a meltdown.
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It sounds from what you’ve said, that you may be expecting “typical”. With his diagnosis, Dad no longer has “typical”.

His brain doesn’t function like the brain he had 6 months ago, and in addition, because he has dementia, it also doesn’t function with any kind of reasonable, regular, predictable pattern. Sometimes people with dementia can become terrified by the realization that they’re not able to figure out things they used to be able to do.

”High side of moderate” and “low side of advanced” are very broad generalizations, but even they don’t necessarily mean that anything he does or says can be expected to relate to whatever he’s done in the past, or how or why he’s going to do them.

You’ve associated these more difficult situations with being out in the community, but you don’t have anything but a hunch that that’s the case. As your description reads, it sounds as though he had left the doctor’s office before he lost control.


Sometimes, large places, like stores or malls, feel more uncomfortable to people with neurological issues.

If he’s been diagnosed by a geriatric specialist, you might be able to get some help there. There might be a very mild medication that could help him take the edge off his outbursts.

He’s lucky to have you.
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Mickilyn, I am sorry that your dad is behaving so violently when he is frustrated.

I can tell you from personal experience that everyone, well mostly, wants to be able to speak for themselves. Including our loved ones with Alzheimer's or dementia symptoms. So you really have to help them be included.

I take a dear friend to her appointments and I find that her doctors will speak over her to me and I think that could be your challenge. I found that if I look at my friend while the doctor is speaking it encourages the doctor to talk to her, it is her health after all. Then I will ask her if she has any questions about what was just said, then she feels safe enough to engage, even if it doesn't make any sense to anyone in the room but her.

With my dad, who liked to showtime, I had to sit slightly behind him so I could shake my head if he was getting to creative with his reality. I mean we are here to get treatment for something going on, you don't want to let them believe that the reality is different than it is. This would encourage his doctors to ask the questions in a different manner and then I would step in and say what I had seen if he was determined to stick to his story.

I know that this adds time to every appointment and it can be frustrating for you and the doctors but, quite frankly, I think that the patient is the only one that matters in these situations.

Please encourage everyone that is taking your dad to doctors appointments to let him speak for himself as much as possible. He will feel better about it and so will you.

I can't imagine how frustrating it is for people that come in and out of reality. Then to feel like you no longer have anything to say about your own health on top of everything else that you have no control or say so over, it must drive some people mad.

Learning to discuss his choices where he lives can help all of you feel less stress. Even if you never give him the medication because you deem it to risky, would it be better to have him angry or give him a dose of vitamin c daily as the new medication? Placebo effects are real and it can't hurt him.

Just my thoughts on dealing with doctor appointments and our elders. It has helped me and my loved ones. I hope you find something that helps.
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MickiLyn Mar 2021
I am learning this one, we all are. I had to go stay with him a few days to do a couple important appointments and this time we were more prepared. We are still quite new to all this, and we still don't fully understand everything but we are doing our best and getting better. He is happier, we are happier. It's still reallllllyyy hard and often exhausting but we are getting better at figuring it all out and working around what we think should be vs what is and we can't control. He had to ask obvious memory Q's in both and I found ways to que off to the Dr's both times without home noticing when his answers were way off but they couldn't know without my input. A out of his eye sight wink, a finger hand behind his head with 5 fingers instead of 2 for how many years since etc.. Anything he was even in the realm of close on I shook my head yes to so I could show him I was supporting what he was saying. Things went much better. He still gets upset to have to do the questions at all with them but at least now we have a game plan, we know to let them know ahead of time what might be coming. It helps, maybe anyone who comes along after will see there is some hope :) I have learned first and foremost there is no point in unnecessarily upsetting him and we avoid as much upset as we can. that requires a lot of balancing as we go, we have to think quick.
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My wife gets very angry if she is not included in any decisions. I have built a great relationship with all of her regular Drs. and most in the ER. They are very good at taking me aside to discuss any necessary changes. The nurses keep her buy for the few minutes that the Dr. needs to cover any new info and changes. This has helped completely stop any outbursts at DR. APPTS.
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i quite honestly don't consider a trip to the MD very much of an "outing", particularly if the decision whether to add a dangerous medication to my meds is discussed in front of me without my input. I am afraid I might have slammed a few heads in the door rather than a finger (attempt at humor is lame, agreed, but I don't see any way this was OK. I am truly sorry someone got hurt, of course.)
If he is no longer capable of making his own decisions about medications it is rather sad he was left sitting like a bump on the proverbial log while others discussed whether or not he should have a dangerous drug added, particularly one that is considered dangerous. I am not surprised he feels he is being treated as a child. It is very difficult to have all power, dignity, choice and options removed in this manner and be discussed as though you are an infant. It is demoralizing.
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MickiLyn Mar 2021
Well to him, leaving the house at all is an outing and losing that freedom and ability to drive was/is devastating, so we try our best to get him out as we can safely because we can't fix that loss of freedom any other way. Please understand, this medication decision coming thing was not known in advance but the result of the exam at that appointment. It was not discussed without him at all, nor without his input or to his exclusion in any way! Simply the Cardio told him he wanted him to discuss and the pros/cons with his family/POA before he finalizing a prescription because it was a big decision and not to be taken lightly. He has pretty poor mobility as of his Hospital stay that got us to this point of needing care, and falls are a real risk. Now that part about his mobility was not said out loud so please don't jump me, but it is a serious choice to take blood thinners while no longer having good mobility. Dad simply had a very extreme reaction to not being able to make his own choice right then and there. I was here, on the forum, because I wanted to know if that is normal because a month ago I didn't know, some of us are new to all this and don't have that MCI phase where we get to learn at a nice pace but rather it slaps us in the face fast and hard with no experience. I was trying to understand how this went so wrong for something that was so easily resolved in a short call to just talk. I get where the Dr. was coming from in terms of safety concerns and I am guessing liability, I do agree it could have been much better handled and we did feel blind sided by the Dr. but more so by Dad's reaction. We had NO idea that was going to unfold that way. Dementia care is certainly not for the faint of heart, I have learned that much! BUT we can suport each other as caregivers, and especially new ones need some compassion too, because it is so HARD! We were and still are learning cues to understand and try to predict how he will respond to things. He has all these emotions still but he often simply can't process them very well anymore. I am coming to terms with that. We are letting him make as many choices as we can safely, but medical professionals do seem to be requiring input from us. So can he competently make his own choices? I don't know, on big stuff probably not.... We still are including him as best we can and letting him believe he has the final say because he deserves that dignity, This situation, again, was not something I could have predicted.
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