Am I the only one who thinks that the clinical advice given to caregivers is wrong?

Oh my word so right on. I’ve been taking care of my dad since 2010. He didn’t need a lot of help initially so I thought but as his mental state started to decline it was obvious to me I needed to spend more time and attention on him. By 2016, I quit my job to help take care of him better yet he got sick anyway and then I really got to see what mental decline was!! But all of his doctors just saw and heard how well I was taking care of him and told me to keep it up. 2018 I nearly lost him to double pneumonia and kidney failure and after that his PCP told me he wouldn’t be alive without me, don’t get him into a SNF or assisted living because he will not thrive there and die. They constantly reinforce that I’m the one that’s keeping him alive and give no real thought to what sort of pressure that is, despite hearing the stress in my voice. Being kind, and positive and compassionate and patient and medically knowledgeable and everything else....who can really do that full time?
I tell my Dad’s dialysis nurse all the time, these doctors may know their field but He is my only patient and I know him across the board. I’ve bathed him, wiped his butt when he was too weak to, and all sorts of things in between. I’ve dealt with crude jokes and sexist behavior; complaints of every sort. There is No text book way of dealing with a parent. Period.
He did an ok job of being a parent in that he told me he just wanted me to be happy doing whatever made me so, but never defended me against my hypocritical, alcoholic, abusive mother and apparently loved being yelled at by her sooo much that sometimes raising my voice to him is the only way he will legitimately respond to me. I never feel ok with this, understand, but if I’ve said it 20x in a week and yelling makes it stick, it’s a sickly sacrifice I’ll take. I apologize for a raised voice every time, which is more than my mom ever did. She’d just blame the alcohol. Sorry this went a bit off topic.

I am new to this site and found some help from both clinical caregivers and family caregivers comments I have read here. As the daughter in law caretaker of my 82+ yo mother in law I can say sometimes she treats me like the hired help, where I need to be told what to do. If someone new comes in (we have had aides just not come back because she is difficult. she says things like... "she's the one to watch out for she's mean. and things along those lines, I am the only one who is there for personal care when the caregiver is gone and its a major battle to shower if she has had a loose bm and its everywhere that wipes wont do it. She screams the water is too hot or too cold or she tries to hit. I try to do everything as gently and fast as possible. she says things like my husband her son is trying to hurt her. And she is always saying we are taking her things. She wants to go home. (she has lived with us pre dementia 3 years, 12 years total so far. She sometimes doesn't sleep for days. and wonders the house moving items taking things and "securing her stuff" really she is taking silverware and putting it in the dryer, or cabinets, removing eggs from the carton and putting them in socks in her drawers, we have added high locks to prevent night time travels outside the house. I sleep with the door open to my room to hear her, my husband works nights, I work days. we have privately paid for caregiver 6 hours a day while he sleeps. Her GP says meds don't work on dementia and wont prescribe. when we were given meds by a neurologist she became a bed wetting zombie that lashed out at anyone that approached the bed. I have learned over the years what changes to look for that show UTI (major personality changes) She has progressed in the disease to not talking or should I say not making sense when she speaks. She doesn't eat much but wants non stop sugar (thankfully not a diabetic) I don't know how much longer she has as the sites don't really give timelines only to say everyone is different. I just don't know how much more we can handle. And the comments about money are very accurate.. care without state insurance is 8K a month in my area, she cant afford that and neither can we.. what are we supposed to do? tips suggestions and direction to look for help would be greatly appreciated.

Glad to see this post now, because I have had months of trying to search for practical ways to deal with negative behaviors. At one point my son became aggressive and semi-violent, almost breaking furniture and artwork on the walls with his pounding. Believe me, I have seen way too many articles online that only give the same, same, same advice and do not suggest specific things to deal with the problems. And "understanding" the behavior only goes so far.

I needed specific and practical steps to take and methods to try to control my son when behavior was out of control. You just can't find that online, perhaps because of concern that sharing information some people could find unacceptable. I ended up having to use "basket hold" and "containment" to keep him from hurting us, himself or furniture. And I only knew how to do this from previous experience in teaching and in a prison. Most people would have no idea how to keep yourself safe while keeping your family member safe. Later on, I spoke with a counselor for dementia care and she assured me that is what staff would have had to do.

Now we have no problems of this sort because my son was started on a medication. And he may be past this part of a stage. But seriously, it's hard to find practical suggestions online. That's support caregivers need and only hear platitudes about. And general "nice" lists of steps that are so general as to be useless.

Why is Rusty2166 allowed to use multiple profiles to post? They have at least 3....

Response to comments from Rusty2166 on Jan 21, 2021

"I hear you loud and clear and you are l00% right. When they are in a full blown tantrum do NOT attempt to explain anything - it won't work. For YOUR peace of mind, so you know you tried, talk to them when they are calm. I doubt it will work but you tried."

This is one of VERY few times you've posted something sensible when discussing dementia behavior. Sadly, you voided any help this would give with the rest of your comments:

"When they are in attack mode, you must very FIRMLY AND STRONGLY DO WHATEVER YOU NEED TO DO TO CONTROL THEM AND MAKE THEM STOP. It might mean just walking away while they rant and scream, it might be telling them "off" so YOU keep YOUR sanity. It might mean to threaten them that they will be placed if they don't stop, etc."

It doesn't matter how "Firm" and "Strong" you are, it's how you approach it. YOUR methods suggesting telling them off or threatening them are not useful. Walking away sometimes works and is a non-confrontational method. It doesn't always work, but it's better than your solution often given for telling them off, screaming at them, just so maybe you get a little steam off and make yourself feel better? Even that doesn't help either you or the person being cared for.

"And if this goes on too long and the impact is beginning to destroy YOU, DO NOT LET IT GO ON. You must remove them and place them as YOU do not deserve this behavior from them no matter what is wrong with them."

Do you understand that not everyone can afford placement? Medicaid doesn't cover all facilities and won't cover someone making over some pittance the state sets (very often these limits are extremely low, effectively shutting out many.) With no financial help, most don't have enough SS to cover the cost of MC. Even those with a pension wouldn't have enough (I DO know that for a fact - my mother's SS and pension covered about 1/2 the cost. I certainly couldn't afford to cover the other half myself, which many would have to do. Thankfully my mother had some assets, which I managed carefully, so she had sufficient funds.)

It's SO easy to tell others what they should do, isn't it? YOU haven't had to do this, not really. You SHOULD have, for your POA charge, but you just bailed on him.

Until you can come up with sensible ways to deal with dementia behaviors (no, they are not just being naughty elders, they have a serious condition and have no control over it and WE have no control over it either!) AND provide assets so everyone can afford MC, buzz off.

Could not have said it better myself you def hit the nail on the head there. A lot of the info given or suggested is virtually impossible at this point. I really do credit the hospitals and nursing home staff who deal with this on a daily basis but for the individual caregiver it just gets beyond frustrating

My own mother has recently slipped into the delusional phase of her dementia, and one thing I have learned is that when I can't connect with her in a reasonable, rational conversation, I can still hold her hand, look her in the eye, and tell her I love her and she will start to calm down. When connecting on the rational level doesn't work, try connecting with your love. It's hard sometimes, but remember that their anger and lashing out is secondary to their fear - they don't know what is happening to them, and they are scared. More than anything, they need to be reassured. JMHO.

You go girl! You hit it right on the head. Many, if not most of these folks got “ training” but have NEVER been there!
Many years ago, I came across this little ditty, and think of it all the time:

We, the Willing
Lead by the Unavailable
Are doing the impossible
for the Delusional.
We have done So Much
With So Little
For So Long,
We are now qualified
To do anything with nothing.


Keep up the Great Job!
( and get your hands on some Loraepam, if not for Mom, for you)

Imho, until an individual is in the active caregiving role, they will not begin to understand it.

yea well getting her comdition more defined woul not be a bad idea - personally i have some real issues with the type of medications used to "help calm" elderly amd dementia patients.
The most commonly used medication at least in the area i live in isHaldol ( i heavy handed psychiatric med for pschitzophrenics and other sever mental illness and morphine though what it does for poeple who are not necessarily in pain I am not sure and of course lorazapam .
I was not happy with the effects over all and with all the miracl of modern medicine you would think they would have found something or hell created something more suitable.
The pint here is you may wnt look closely at any meds they suggested.before just diving in and medicating. I understand - if it was not inefeective advice it would almost be comical as I imagine an elderly parent yelling and being a bit paranoid acusing someone of tamperin with their belongings etc - pretty irrational while you try to establish boundaries - what does that mean anyway - would that parent listen to you while they were over excited and ranting... ridiculous. I agree we get handed a considerable amount of cookie cutter advice couched in more or less clinical terms to make is sound more valid.
bottom line is sometimes there is no answer sometimes what we experience when we declinephysically cannot be easily or even rationally dealt with.
sometimes you have to just hang on make sure neither of you get hurt if they get physically abusie and try your best to decide if it happens often if in home care is still a good idea. every situation is unique to that family . would be nice if people did not pretend to know the answer. or as if there was a defined answer.

Rather than conducting a Google search on how to deal with your emotionally abusive parent, you should talk to her doctor to find out if she has full blown dementia/Alzheimer's or what exactly is medically wrong with her. Once you find out, THEN she can be prescribed medications to calm down her delusions and agitation, etc. You have not filled in your profile, so we have no background info on your mother or what her age is or what her health issues are.

Dr. Google is only as good as the questions or prompts it's fed. Not to minimize your stress or your pain, but we are laymen looking for medical answers online. It doesn't always work, that's for sure. I've done it myself at times......I think we all have; searching for answers in a sea of information.

If your mother is acting out in a destructive manner and accusing you of nonsense, something is very wrong. Get her to her Primary Care doctor for a referral to a Neurologist, that will be your best bet. She may even need to be placed in a managed care residence at some point down the road.

Wishing you the best of luck managing YOUR life in the midst of your mother's issues. It's tough, to say the least

Caregiving was really rough for me because I was not "that person." The clinical advice was good for a laugh about how clueless the "experts" are. I found the fact doctors just wanted to put you on happy pills worse with the root of the problem never really getting addressed. One day, I hope we can all figure out a real solution.

Am I the only one who thinks that the clinical advice given to caregivers is wrong?

NOPE.

"...posts that has been comforting or helpful in some way."

Sometimes just knowing you aren't the only one out there can be comforting, in a small way. It does let you know that it isn't you, that you aren't crazy! Doesn't solve the problem, but it helps a bit.

"...the clinical/textbook responses..."

Book smart but real life stupid. As others noted, unless you've walked a mile in dementia shoes, you haven't got a clue! Some of their blah blah might help in certain cases, esp when dementia isn't involved, or it's in the earliest stages, but most of it is tripe. Even for those who have walked in dementia's shoes, every person's "journey" is unique. There are common symptoms and behaviors, but not all "tricks" work in all cases. Sometimes it takes trial and error.

"Today my mom went into a full blown rage. And she started to accuse me of tampering with her catheters and hiding some of her personal things. All the while screaming and crying and claiming that I was physically harming her."

Sadly this is a common occurrence. The blah blah isn't helpful. Have a conversation with the person? Set boundaries? For someone who can't remember what you just said or what they said or did a minute or two ago? Nope, useless. Again, SOME of this may work in the earliest stages, but not always and certainly not through the whole "journey." Add in hallucinations, forget it.

"I would have better luck talking to Clifford the big red dog."

I did have to chuckle at this comment... The situation isn't funny, but that statement is! Likely true as well!

"Don't these doctors and all these people who make more money than I'll ever see know or understand that being a caregiver is the most challenging job anyone can have?"

Nope. Clueless. My mother's doc at the time I needed something from them to become mom's rep on her pension (federal, so POA is NFG) WAS helpful and agreed to provide it. His office staff, on the other hand, was LESS than useless. We need documents stating what's needed. I SENT those before they set up the appt, AND then provided again as attachments in the Portal. Then we need POA, which I ALSO gave to them and then attached in the Portal. NINE months later, with multiple calls and portal requests each month, I had nothing. We needed to change docs anyway, as the move to MC was too far from their office, so I got what I needed from the new doc. She was less than helpful too. Just as I was switching us to another doc, she retired (wasn't even that old.)

"And we are still overlooked, overwhelmed, overworked and under appreciated. We have no benefits or retirement plans. We suffer from poor health ourselves. We are prone to high levels of stress, depression, anxiety and everything else that falls in between."

PLEASE everyone, see my other post so we can ALL address this with our state reps and Senators. If we don't speak up, this will never get the attention it needs. WE need to speak up NOW!

For OP, if this is not her "normal" behavior, as in this is relatively new, I would still suggest a UTI test, culture is best, but also blood work. ANY infection can trigger odd behavior and blood work can reveal increased WBC, indicating infection.

If it is her norm, I would still seek medical help. There may be medication(s) that can help. Mom's only out-of-control behavior occurred with a UTI. We had to use anti-anxiety meds to take the edge off - just enough to calm her, but not enough to dope her. Not every med works for every person, so it may take some trial and error to find the right one. If possible, have this done by neuro in the hospital (she stays until the find the right ones.)

EVERYONE - Check my other post and go to the links provided. As my mother used to say, the squeaky wheel gets the grease. WE NEED TO SQUEAK, LOUDLY!

I totally understand your feelings because I experience some of the same behaviors you are encountering. Last night, I was told when giving the third dose of meds for the day: Just give me the pills! I deal with a daily battle to get my parent to drink enough water to avert another UTI (which manifests itself as psychotic behavior in this person), even just enough water to stay alive and I become "Bossy " I am "The Queen " I am "Running the show, so I [her speaking] have to do as told ", and so on. Driving her places becomes a prime choice to lecture me about how bad I drive, etc. I agree with you wholeheartedly that home family caregivers are largely ignored/taken for granted. No one knows but us of the types of abuse (verbal, in my case) we endure in the efforts to just Get Through. I actually investigated what my state would pay a home caregiver? Nine dollars an hour!!! And that pays less than a job selling hamburgers (not that there's anything wrong with that). And, at least where I live, the patient/parent that is being cared for has to have less than something like 2500 USD in total assets Before the caregiver can be paid the generous sum of nine dollars an hour. I wish I had answers to your problems. I want You to know, at the end of the day, You have done the best you can do for that person. I am sure that you do. I believe in you, in your strengths, and heavy responsibilities. You are not alone in your struggles. There are many of us out there, who are there, and we are here for you.

Before responding to OP's post, there are several posts that are pointing to the need for help:

"JD654321
3 hours ago
I would like to see more supportive laws and governmental benefits extended towards caregiving arrangements. Family bear such a great burden, with loss of health, income, life prospects. We love those in our care, but this issue is swept under the rug, and there is a high cost to millions of Americans. It's a silent crisis of care. Eldercare reform is needed! We need help!"


"NinjaWarrior3
2 hours ago
I think that you are exactly right. You should post this EVERYWHERE (newspaper, Facebook, politicians, etc.) so that people know what we actually go through.

There needs to be more awareness."

I posted the following back on Nov 29, but so far only 2 people have commented. I don't care about getting comments, but I DO care that this is taken seriously and WE as a large group take action! I've not seen this come up in the daily or other emails from this site. Seems like it is just out there and no one is seeing it!!!

Posting a simple response will let other know you are on board and will help! While the "help" may come too late for our current situations, it might help others or may be useful for our caregivers, should we end up needing help. Please READ THIS:

https://www.agingcare.com/discussions/suggestion-to-become-active-in-promoting-caregiver-help-not-a-question-463299.htm?orderby=recent

There is a reference to a NY Times article, that you need to read to understand - I've given some highlights, but it is best to read it yourself. It didn't post as a link, but you can copy/paste it to another browser window.

I've also posted links in it to help YOU find your own state reps and Senators. We are all over the country, so if EVERYONE does their part, ALL Senators and Reps will be more aware. Send the Times article to them. Mention how difficult your own journey is. WE need to inform them ALL and get this done! While it's great to say hire someone to get a break or place someone who needs placement, not everyone has the resources. There are so many on this forum that we can become a big voice for ourselves and others!!

The final quote in the article sums it up:

“Things don’t happen on their own,” she said. “I’d feel hopeful, but I’d also be preparing to get to work.”

WE NEED TO GET TO WORK!!! PLEASE take a few minutes to read it all and write to your reps and Senators.

I hear you loud and clear and you are l00% right. When they are in a full blown tantrum do NOT attempt to explain anything - it won't work. For YOUR peace of mind, so you know you tried, talk to them when they are calm. I doubt it will work but you tried. When they are in attack mode, you must very FIRMLY AND STRONGLY DO WHATEVER YOU NEED TO DO TO CONTROL THEM AND MAKE THEM STOP. It might mean just walking away while they rant and scream, it might be telling them "off" so YOU keep YOUR sanity. It might mean to threaten them that they will be placed if they don't stop, etc. And if this goes on too long and the impact is beginning to destroy YOU, DO NOT LET IT GO ON. You must remove them and place them as YOU do not deserve this behavior from them no matter what is wrong with them. You are, after all, a human being too with rights.

I think that you are exactly right. You should post this EVERYWHERE (newspaper, Facebook, politicians, etc.) so that people know what we actually go through.

There needs to be more awareness.

KJ, I often share your sincere feelings when I read comments. But again, everyone
has a different set of experiences, which creates different approaches, so be fair.
I feel the pain and frustration you are experiencing although my sister (dementia +
arthritis) is in a BNC home. For your sanity, which should be/is the FIRST priority,
Mom needs placement. Now I will read the comments others have submitted here.

Annamarie, please tell the hospice nurse to back off. Actually if I were you I would ask whoever sent the nurse to send someone else. Lecturing you about your care when you know better is out of line, and not helpful to you or your mother. The hospice nurse is supposed to be there for support, including for you. This one does not seem supportive, so get somebody else. The last thing you need while you have a parent on hospice care is a clueless nurse.

To the OP, Kayla - you are spot on! People who have not been in our shoes do not have a clue. I get it too, because before I was manipulated into this gig I didn't have a clue. Oh how I WISH I would have been on this forum BEFORE I made a bunch of bad decisions. But at least I am here now, and with people who truly get it. It's a life-saver.

Sometimes, when I am out with my mom and having to deal with others, I can tell who has dealt with this, and who hasn't. My mom's dementia is getting more evident in public because she can and will be rude and inappropriate. Some people get kind of a shocked look, but the ones who have BTDT approach both of us much differently. Some will even share with me that they had a LO with similar issues. Once you have been in these shoes you do not forget it.

I would like to see more supportive laws and governmental benefits extended towards caregiving arrangements. Family bear such a great burden, with loss of health, income, life prospects. We love those in our care, but this issue is swept under the rug, and there is a high cost to millions of Americans. It's a silent crisis of care. Eldercare reform is needed! We need help!

You are 110% correct! Please stay strong even though you are underpaid, overworked and overwhelmed. With covid I cannot imagine. Bless you all and thank you!!!

I am super frustrated with the hospice nurse. She listens to my mothers complaints and then lectures me on how I need to do things differently. None of which is based on reality. I find myself trying to defend myself against the accusations that the nurse is bringing and overwhelmed because she comes one hour a week and doesn't really have a clue what is really going on.

Having your loved one go full in tantrum is unsettling and can be scary. So here is my advise, as an RN having dealt with A LOT of scared and potentially violent people.

1 - Agree with them that things don't seem right. You are not accepting responsibility for whatever accusations are being made. You are just empathizing that the world your loved one perceives doesn't make sense to them.

2 - See if you can get him or her to sit down and take deep breathes. Focusing on 1 simple task of breathing calmly may help them to calm the adrenaline rush down so they feel less panicky.

3 - Consider factors that might have contributed to this outburst. HALT is a good acronym: hungry, anxious (scared or confused), lonely, tired. In addition, think about medical factors that may be a problem: infections (take temperature), stroke (do FAST check - see symptoms online), or medications side effects - usually anything that must be taken regularly. Has anything changed in their routine or living space.

4 - Try to divert attention to something that is part of their usual life: a picture, an activity.... If they are threatening violence, make sure they are in a safe place where they can not hurt themselves, you, or destroy the room - and let them settle down by themselves. If they become violent, call emergency services for help. Do not let yourself get harmed.

5 - If violent outbursts are becoming a pattern, take your loved one to see his/her doctor. An examination may reveal an infection, an imbalance in blood chemistry, low oxygenation, or other problems that have a medical basis. If those are ruled out, the doctor can prescribe medications to help calm your loved one's anxiety to they will be less likely to to panic.

6 - If at any time you feel your life is in danger, call emergency services to restrain your loved one and take them to the hospital for an involuntary psychiatric admission. It is better to have people who are trained to subdue individuals to their work, than for you to be abused.

Well expressed, I have often found the same information ridiculous .
Here is some real advice......don't bother trying to have a real conversation with someone who is delusional and cannot even remember what was said 5 minutes ago or what they ate or if they even went to the bathroom.
My mother has become a willful and argumentative 5 year old in an 84 year old body that works poorly. I have distanced myself some and now she is glad to see me. We often use treats to get her to do what she needs for self care. Now every week getting her to shower is a constant battle. She refuses even from her favorite person in the world, her paid part time caregiver.
I am called the bossy and controlling daughter. I certainly did not choose this role for myself. In what hell would I want this responsibility? Thankful my sister helps but two brothers estranged completely. Daddy died last June without even seeing them.

We have all been there comrade. And we are all comrades on this site because we all walk the same walk in one way or another.
This is the best site for help.
No offence to the so called professionals but until they have walked the walk they cannot understand what we go through.
The way I handle my narcist mother is to be firm but respectful.
In your circumstance, if possible, it would be good to temporarily put her in elder care home with no contact. Then, after a month go in a talk with her. Lay down the law and let her no in no uncertain terms that her behavior is not tolerated ( there is no sense in telling her it is abusive because she will not listen ).

Yes caring for loved ones is hard. My grandmother is the same way. I feel sometimes that she is trying to drive me crazy. We are essential workers and some of the best. No one knows what we deal with on a daily basis and add the virus in there and surely their are days when I feel over the edge. People are struggling because of the virus without caregiving. BUT God! I have turned to prayers and found even when the world overlooks us he doesn’t. He sees everything and knows all. Siblings turn their backs and it’s their choice. Others say we do nothing. God knows everything and He is the only one who needs to know and reward us for our duties. He also work through us giving us his strength and wisdom to carry on. When this got to be much for me I turned to prayer. I saw a BIG change in me and her. Days when she acted up I prayed and found many times even she chilled out or i did. Forgiveness to any and everything is the key. Remove any added stress including recognition from others. It will come - but instead of validation of the world. Rewards from God who can store our treasures of kindness, love, empathy in heaven. Pray. It is the answer to your question. Hugs strength is yours through the lord.

It has all been said - above. The the stressed caregiver...you are not alone and thank you for sharing your experience. It was helpful to me. And I pray that you and your Mom will work through the difficulties that come when an elder declines. God Bless.

I agree with so many others, the best advice you can get about care giving is from other people actually giving the care. When both my parents were ill a few years ago and I wasn't sure what to do I did a Google search and found AgingCare.com and haven't left. Why bother seeking advice from clinicians who know how to talk the talk but have never actually walked the walk?

“Have a conversation with your parent” hardly sounds like helpful clinical advice. Some who we rely on to give us practical advice are book learned only and have no experience with what caregivers have to endure. But most caregivers aren't looking for clinical advice, theyre looking for hope. Some way to ease their pain, their grief, a way to cope. Rather than clinical text books or websites, which are informative if you want to know about a disease, books written by those who have faced the challenge of caregiving, all the emotions, the stress, anxiety, isolation, etc., can be helpful. What you get from participants in this forum is just that. If you want honest, practical, real life advice/ opinion/ suggestions, ask a caregiver.

The best advice you will ever receive regarding caregiving, is from other caregivers themselves. That's why this forum is so invaluable. Unless you've been a caregiver yourself, you really don't understand what it's like, nor can you speak to what we go through, so please "Google" don't insult our intelligence by trying to.