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..... :(
Getting smacked in the head with the reality of these situations is no fun and it takes a bit to find your equilibrium and you are doing fantastic.
Keep up the great work!
Great big warm hug!
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.
Include him in the discussions from now on.
"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."
It might be better to have the discussion between the doctor and the POA/family first. He may think it's his decision only, but when there is a risk involved, he likely doesn't have the capacity to really understand. IF the POA/family get all the information and discuss it first, then decide it might be worth the risk, THEN include dad in making the decision for himself. If, on the other hand, the POA/family feel the risk is too great, then don't mention it to him.
As for the other "meltdowns", perhaps a very low dose anti-anxiety given a little before the planned outing might be in order. I'm not a fan of medications, but sometimes they can help. They used one with mom during her initial move into MC, lowest dose, just to take the "edge" off. Sometime later, due to a UTI, she had serious sun-downing in the later afternoon/early evening. She was totally off the rails! Usually she was quiet and calm, liked to sit and read the paper, magazines, sales flyers (the best!) They had to use the anti-anxiety along with the antibiotic. She wasn't doped up, but she wasn't a raving lunatic either! I wasn't there for the first 1-2 weeks, so never saw the effects then, but I DID observe her during the UTI treatment. Worked first time, every time, within about 15 min and it didn't need to be weaned off. So, it could be Rxed "as needed" and only used prior to any "outings."
The suggestion to keep the shopping trips to the absolute minimum, picking up the rest later, ordering online for pickup or delivery, sounds like a good idea. It could be over-stimulation, kind of like some kids will get when there is too much going on. Going out for a drive, a walk, coffee, etc, can help alleviate his "need" to get out. Socialization can be helpful, but it can also be too much for them to handle, so keep the trips as short as possible - just enough to satisfy his need to be out, but not enough to "wind" him up!
In some ways it IS like dealing with a child. He doesn't need to be treated like or talked to like a child, but be aware of his limitations and act accordingly. If it's time to go home and he's resisting, offer some kind of "reward" that's waiting for him, a favorite snack or activity, to entice him to change his mind.
People need to think their input matters when it comes to ownership of their own bodies. Unfortunately a lot of medical providers forget this and speak only to the family member and don’t address the patient.
It’s frustrating to lose control and a dementia patient watches their abilities slowly disappear and now when decisions are being made about their bodies, they are having even their voice taken away.
There is something about dementia that allows a person to have it quite together at certain times. They can be totally separated from reality and yet when an ambulance worker or dr talks with them, they can surprise the heck out of you - so much clarity. That's why when there's been a big event at home and you call for help, they are refused transport - they answer questions that they couldn't have answered for you just 20 minutes prior, they say they don't want to get in the ambulance and want to stay home.
Getting out and about can create some confusion and is frustrating. They are looking around as they ride in the car and can't quite remember the grocery store that has been on a particular corner for years, they get confused about where a road goes even though they've been on that road 1000 times. So many things they see, they are trying to sort out and just can't quite do it. You might discuss this recent event with the doctor so he understands there are still times of clarity. Maybe next time, have the doctor talk to him while others listen - then doctor could suggest, this is what I'd like to do so why don't all of you go home and discuss it. It might help if he doesn't feel excluded and knows he's being excluded.
It may be he reaches a point where going out is just not possible because it's too much confusion. If he can't get video dr care to minimize travel, then you'd have to think about going to a facility or just letting in-home health providers do what they can for him from the house. They get orders from drs and can do nearly anything that is done in the drs office - test for UTI, bloodwork and other lab work. Relay info to the doctor to make changes in meds, etc.
she would ask me. [Note, Mom does not have Alzheimers].
Could his store outings just be for a few things and have the rest delivered? Or could everything be ordered on line and placed in the trunk? So he could go for the ride and help unpack?
A weekly ride for an ice cream might be a good treat.
Best wishes.
He has in home care. OT, PT, RN each rotate in and out. His PCP will do online appointments if he doesn't need soemthing physically looked at closely. The cardio could not do that, they were trying to determine if he had A fib and he sure enough did! A fib led to blood thinner and there was the problem ;) Thank you for you kind reply, it was helpful!
If you find he is having more meltdowns, he is probably not able to follow the conversation or understand what is required of him. Consistent routines and environments will help him know what to expect and not end up "surprised" with frustrating circumstances. On days that you expect to be more trying, it might be helpful to a prescribed anti-anxiety medication available to help him relax and not get anxious, frustrated, or angry.
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.
His socialization outings (not doctor's appointments) may have to change now. Like him not going to do his own shopping. Stores can be overwhelming for people with Alzheimer's/dementia. So, maybe socialization like going out for a coffee with his caregiver or you can be a possibility.
Look into sending him to adult day care a couple days a week. He would be getting activity and socialization in an environment that has staff who can handle a meltdown if one happens. Many adult day care facilities also offer trips to a store and other kinds of social events. This might be a good idea for him.
Keep slogging along, while it doesn't get any better, at least you are trying to meet the new challenges and that will keep YOUR brain healthier (at least that's what I am telling myself!)
We stopped taking him to family gatherings pre-COVID because it was so stressful for him. We realized that part of the stress for him was anticipating outings! He worked himself up before he even got out the door that any little hiccup threw him into a tailspin.
As for your dad begging to go to the store once a week, try a therapeutic fib e.g. "Sorry, dad, this week I need to get your groceries delivered". It is unhelpful to think of stopping outings as giving up on him. In fact, it's the opposite once you accept that keeping him in his routine is what is best for him.
I’m wondering: for people with what was formerly known as Aspergers, outings can also be difficult. Many have found that using earphones (with or without soothing music playing), and tinted glasses while both inside and out can be helpful.
While I realize your Dad has been diagnosed with Alzheimer’s, not Aspergers (totally different), I wonder if these things might still be helpful in cutting down the stimulation and therefore stress (for all involved) that evolves during these outings?
Of course, 97yearoldmom’s joke about the anxiety med might not be a bad idea either 😄
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.
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.
by the way.... everyone...wants to be home :(
some say its a metaphor.
and its hard to move anyone now cuz of covid...
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...
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.
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.
Your situation today may be similar.
Having heard all 5 of them say this to me makes me think I do indeed tend to do this at times.