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My dad who will be 80 next month had never been sick in his life until he had a mini stroke back in 2017. He really didn't have many issues with that. Then he had open heart surgery back in August. During that hospital stay, there were some complications and on top of that he had pretty severe Hospital Delirium. He recovered from that only to get an infection around the new heart valve that was found right after Christmas. It has spread throughout his body and is especially affecting his spine. It cannot be fixed without another open heart surgery. After over 2 weeks in the hospital this time, he was discharged because he was in too poor condition mentally to be able to survive surgery. He is home now and on IV antibiotics via a PICC line for a few weeks and oral antibiotics for the rest of his life. The infection will not go away without surgery. But he isn't a candidate right now. Even if his mind clears up, he would never agree to another surgery. This 2nd hospital stay he also had Hospital Delirium as well as Sundown Syndrome. It hasn't improved and he has been home just over a week. In fact, it seems like it is worse. Other than the Hospital Delirium that cleared up after the first hospitalization, he NEVER showed any signs of dementia until this hospital stay.


My sister, my mother and myself are caring for him but...


*He will walk from the bedroom to the living room on his own but ask for help getting back to his room, or vice versa. Then the next time, he will want help with it all.


*He will go to the bathroom on his own but the next time will call out for someone to help him to the bathroom. Someone will go to help him and he will say nevermind. Then he will proceed to pee or poop in the bed. Or he will call out to us and if we don't answer right away, he will scream that he is going to poop or pee himself if we don't come. And he does and we have to clean him up.


*He will say he is hungry, we will make him something to eat. Sometimes he will eat it, but more times than not, he will play with the food, break it into bits, smear it, throw it, or do other things to it.


*He will yell for one of us, someone will go in and he will say nevermind. We will go back to what we were doing, then 5 minutes later he is calling us again to just do/say the same thing again. Or he will call us into his bedroom and ask for help. When we ask him what he needs help with, he gets mad that we don't know what he needs help with and gets huffy and says nevermind.


He will call on one of us and if we don't jump up and run in there immediately, he will have a little fit and throw things. The other day he kicked everything off his bedside table. When I went in there and asked him why he had done it, he said, "I didn't do it". I said, "Then who did it"? He said, "I don't know". Just like a child would do. Or he will call one of us in there and he has taken his oxygen tube off after we had just put it on him 5 minutes before and I will ask him why he took it off. He will say, "I didn't", or "I don't know".


One of the most heartbreaking things is, he calls us names, tells us we are useless if we don't do exactly what he asks immediately, insults us, and other hurtful things. He thinks we don't love him, that we are hateful, and tells us he doesn't love us. When we have all put our lives on hold to care for him.


We are at our wits end. He and my mother are divorced but friends and roommates. She is not in great health herself and can't keep doing the things she has been doing for her. My sister works full time, has a family with a husband on dialysis at home and cannot take anymore time off. I live 4 hours away and can't continue to travel back and forth, not just because of the distance but I too have a family.


It is very hard to see our rough and tough Marine father that worked in construction all his life be like this. We promised our parents we would never put them in a home. The guilt is eating us alive for even considering it. HELP!

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i never heard of hospital delirium ? what is it? if he has dementia being in the hospital and having the first surgery with anesthesia make dementia worse in my opinion but sometimes surgery is needed for whatever reason. even though you promised no NH............don't feel guilty if you have to go that route........not everyone is made out to be a caretaker unless you want to hire someone to come in for shifts of taking care of him. good luck
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I would want a THOROUGH workup done before resorting to any NH. They likely are just going to try to "treat" the symptoms rather than getting to the bottom of what is causing them.

There can be many reasons why sudden onset of dementia-like symptoms happen:

*anesthesia
*medication reactions, INCLUDING antibiotics
*electrolyte imbalances
*UTI - yes even if on antibiotics

At a minimum:
Culture urine test
Blood work
medication review

*My daughter was allergic to an antibiotic (9 mo old!)
*My dad had valve replacement, twice. He could *NOT* take the medication that he was supposed to take for the rest of his life. They cut the dose over and over and finally had him on 2 baby aspirin.
*Heparin, which should reduce platelets, caused my platelet count to go sky high! They didn't figure it out until I ended up with a hematoma (in hospital the whole time!)

Just a few examples. Some medications are safe for MOST people, but for those who can't take them, it can be hell!

I would want your dad in the hospital until they figure out what is going on, rather than at home or in a NH. Clearly something isn't right. Dementia typically doesn't begin at an advanced level. Could it still be some hospital delirium? Maybe, but it still seems a bit too far for that.
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Sometimes the meds have the opposite effect and make people really really bad. Please try for sleep a liquid melatonin. The doctors prescribe to much of a dosage and that stops your body from making it. You dont want your body to stop making it. You need a low dose thats why the liquid is much better. You cant really cut the pills as small as you need. You can get zarbees childrens liquid melatonin at target or amazon. It has a dropper in it so you can get the dosage you need. start off slow with maybe .35 ml for a few nights to see if it helps if not raise to .50 ml and so on. Try to not go above 1 ml. You want to add to what your body makes not stop your body from making it and if you take too much that is what will happen. Put it in a small shot like type glass with a few swallows of water. Stir it up good and drink. It tastes really good. I hope they are not giving him all those meds together?????? Have they checked for a UTI?
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Petite1 Feb 2021
also hospital delirium can last quite a while before it starts to get better.
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Imho, you could contact the Veterans Administration. Prayers sent.

BeccaWNC: I wish you well with your father.
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You mention several things that could point toward increased signs of dementia.
1st, Endocarditis, infection of heart valves that goes septic can cause increased signs of dementia,
2nd. TIA's can be a sign of vascular dementia,
(Vascular dementia is the second most common form of dementia and is caused by reduced blood flow to the brain – usually from a stroke or a series of strokes.)
3rd. New sleep meds. If the kidney or liver do not metabolize the meds fast enough, the meds can build up in the system and cause stroke like symptoms or dementia like symptoms.
I have been through all of this with my wife, some multiple signs.
Endocarditis 5 times. 4 strokes, unknown TIA's, bipolar disorder with multiple meds to help level out the moods.

With her psych meds, she is on about 25 different Rx meds.
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Unfortunately your father has developed serious physical and mental conditions that are NOT going to be fixed and go away - they will get worse. Do YOU really want to live like this with him in your home? It will become sheer hell for you and you will have no life. When life causes such severe mental and physical problems in someone else and it has a terrible negative effect on us, we should NOT feel guilt because we promised never putting them into a home. Facts change and new decisions must be made for the best of all involved. No family should feel guilt for placing a man with these problems into a facility - that is where he belongs. Think not of what he once was - look at what he is now. He does not belong in your home. You must be strong and glad you care but circumstances require a different outcome now. And I doubt he would know what is happening.
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my2cents Feb 2021
Rusty/Riley2166 You have absolutely no common sense about dealing with dementia and no way of knowing what this poster's father has developed. I suggest that you share all of the things you post with a counselor to find out why you have a need to post things like this. The posts seem to have gotten a little harsher in past few months, so reach out for help. -- That's what this site is all about, offering suggestions on getting help.
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This very same thing happened to my late fiance. He had a stroke, and within a year had quadruple by-pass surgery, which necessitates being put on a heart-lung machine and having somewhat reduced oxygen for a prolonged time. Afterwards, he had terrible delirium and kept trying to get out of bed. One night he tried to get up 13 times in one night even though he was connected to all sorts of tubes and I was sleeping right beside him in a hospital chair/bed. (Someone MUST be with your father 24 hours a day if this is a problem.) He saw "bugs" crawling on his skin, had delusions about various people, etc. Even after he went to a rehab facility a week later, he continued having this delirium and it became even worse because of unfamiliar surroundings, other patients who made strange noises, etc. It took almost two weeks for his delirium to end. But it did finally end.
Do not get discouraged. Basically, your father's brain was damaged by the stroke and before it could heal it was damaged again by the anesthesia and lack of oxygen. It takes time to heal. Lashing out and hurling insults at others is a very common behavior when someone is affected. Here's an easy-to-understand guide, put out by the UK National Institutes for Health, for families dealing with this problem: https://www.bfwh.nhs.uk/wp-content/uploads/2016/01/00006193-Post-Operative-Confusion.pdf
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BeccaWNC--It's very possible that your father won't even remember the "Golden Promise" (about never being placed in a facility), so this should no longer constrain you from doing what needs to be done for both his and your best interest.
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So sorry you are dealing with this. Your dad is not suffering from hospital-induced delirium. Hospital-induced delirium happens when people are out of their usual environment, go through a lot of procedures or have a lot of equipment that is not "usual," and tend to not get enough sleep. Hospitals are very busy, noisy places; I have worked all shifts as an RN and the few hospitalizations I endured as a patient were not restful.

Your loved one is most likely experiencing infection-induced mental alterations and maybe another insult to his brain (mini-strokes in the areas that handle executive functions). The infection creates toxins that affect all his organs, including his brain. If the infection does not clear, this is probably his new reality. If he is not getting anticoagulants because of his defective heart valve, he may be at risk of developing mini clots that can lodge in his brain - and cause these distressing behaviors.

The best way to manage this behavior problem is consistency. Try to create a routine that everybody follows when caring for dad. The routine will eventually help him to relax as he knows what is going to happen next. If he has problems in the evening with agitation and confusion, try getting him into the sunlight during the day for 30 minutes or more (reorients his circadian rhythm). Also turn on more lights in the evening, but dim them about 1-2 hours before bedtime so his brain will say to him "it's time to wind down and sleep". Some folks find medications for anxiety helpful to calm the agitation that leads to outbursts. Some folks find using over-the-counter sleep aids and/or CBD oil helpful. Before starting any new medications, consult his doctor(s).

If you find that his behavior is making it difficult for others to function, you may need to place him in a residential facility. Every family member should be able to get 7-9 hours of uninterrupted sleep, 3 healthy meals at a reasonable pace. "time off" to meet their own health needs, and time to have healthy interactions/social life without dad (consider this mental health breaks). If you find that the majority of family are having mental anguish with dad's presence, and can not get their basic life needs met (see list above), then I suggest finding a nice residential facility close to home to care for him. Try to find one that will allow you to visit frequently. Talk to his doctor(s) about whether or not he should be placed on hospice. Hospice would allow family to visit more often and would focus on quality of life rather than curing incurable health problems.
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Hi I totally feel your pain and I had the same situation with Gpops. Same scenario- fine mentally before surgery but complications with anaesthesia meant his heart stopped and resuscitation. He was very confused during hospital stay. I had to demand an assessment and referral to the memory clinic. Scan revealed vascular dementia. Obviously I’m no medical expert but given the heart problems and your description I would want to get your dad assessed for dementia. VDem is v common as we get into our 80s and above as it’s simply the heart not pumping efficiently enough to get enough blood to the extremities of the brain causing the brain to shrink. I’ve done a lot of research and questioned the medical professionals at length but you must get your own advice and assessments done. Hope this helps. X
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The only time my 96 yr old Dad has delirium is when he gets a UTI from a Cathiter tgat he wears 24 7.

He can also get delirium from dehydration.
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Call VA and your Dad's Insurance and see what all they can offer.

My 96 yr old dad wanted to stay in his own home so I hired 24 7 Caregivers.

You might check to see if your Dad's Insurance would pay for Home Health where an Aid will come 2 - 3 times a week to help to clean him up bath/shower they will also have Therapist come out 2-4 times a week to help with upper and lower body.

You might hire a Caregiver to help out a few hours a day.

My Dad decided he wanted to sleep in his recliner so we bought him a new comfy auto recliner that we made up like a bed and he is more comfortable in it.

The only time he gets out of his recliner is to eat at the table and to go to the bathroom.

He does not like to be left alone.

You might try leaving your Dad's TV on or have music playing in his room.

Or maybe he is just bored and doesn't like being in his bed in his bedroom by himself.



Be sure to install Cameras so you can watch what goes on.

Nest Cameras is what I used and they are pretty easy to install.
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You say he's on antibiotics. Some antibiotics have been linked to mental confusion , delirium and symptoms that mimic dementia. Speak to his doctor asap.
For example : Gilly suddenly had instances of being confused , angry and having hallucinations etc . Everything seemed to point to rapid dementia but it was , as I suspected , a UTI that had spread . His pain meds then made it worse for a while and we switched them on doctors advice , he was his normal self over the next few days.
I shudder to think how many people in the past have been sent to homes and labeled crazy simply because they didn't get an examination from a physician .
Without a proper investigation and diagnosis you're just spinning your wheels . Get him looked at and tested and go from there .

Good luck

L
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Please look into respite care. Many assisted living and memory care facilities offer it, but it's rarely mentioned. It's a short term stay at the facility that gives the caregivers a break , and also allows you to test out the facility. None of you are going to make the best decisions for anyone under all this stress. Get dad checked for a UTI or other infections that may be causing his behavior, and then buy yourselves some time with respite care to see how it goes. My mom was really awful to me at times when I was her caregiver, but the change of environment seemed to help, and I was allowed to get off the adrenaline train and calm down. And mom seems to be a completely different (kinder) person with the new people around her. I'm thinking this could be a much better permanent situation for all of us. Maybe it would be for your family, too.
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I only see one reply so far that mentions UTI. It is possible he developed one in the hospital. The antibiotics he is on may not even touch a UTI, probably need different antibiotics. My mom had a UTI, I kept saying that was the problem as soon as her personality suddenly changed, but hell, what do I know? I'm five hours away, I'm not a medical expert, I read things online, and my friends' parents have been through UTIs and I knew from their experiences that checking for a UTI should have been done immediately. End of story (and I'm still angry, I admit that) is that mom went totally bonkers, dad had to do an ER drop (got that idea from the folks here) before she got any care at all, but by then it was too late. She passed a few weeks later.

Please ask that a culture be done for UTI immediately (takes two days to get the results back). You may have to demand it as they will say that the urine isn't cloudy or there isn't an odor or there isn't discomfort when urinating, etc. That was why my father didn't push for it even though I was saying it should be done. Certainly those nurses knew more than me who has no medical background (but I've been dealing with a disabled husband with multiple issues since 1995, so I know my way around).
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The three of you need to have a family meeting of the minds and decide the best help and place for your father. Make sure you have POAs in place, if not get them now.
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How are you Becca?
Has Dad improved at all? Have you & your sister got any more support?
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It is a very hard place to be - I care for my mom and just went through another 3 weeks in a hospital with UTI and peg tube complications (she uses it still for additional water intake). They replaced it in the hospital and it had major complications (which I why we were there so long). Since her stroke most antibiotics bring on delirium and every infection or UTI takes a lot of the gains she has had. I have also begun to see the cognitive decline and yet I feel like they sent her back home with another UTI. She could not receive proper fluids after the tube replacement and the signs of UTI on my mom is this type of behaviors. It is so hard to see what is a possible infection - what could be dementia etc. it would be worth having him checked for one as well as bloodwork and electrolytes. Even dehydration or low level potassium can bring on some strange behaviors - again I have been through exactly the kind your stating. My moms stroke was large and she does have damage but when she is this combative and angry etc - it is usually more of something else out of whack that is causing these type of extremes. She also had tried anxiety meds in the past and they had the opposite affect...she became worse.
my take on nursing and skilled and even hospitals in my area is different. I pulled her from the first snf after her stroke due to the conditions. I’m in south Florida and I’m mortified by what they consider care for higher level patients. It was ok sleep there and oversee everything or go home and do so. It is so very difficult but after just spending 3 weeks in a hospital with the “2020 stroke excellence award” and seeing first hand that I know more about how to position and care for someone’s disabilities what again a reminder of why I care for her - why I was her voice and advocate- I saw nobody was feeding her or giving her enough fluids - I saw if they slipped in a medication and didn’t tell me becasue I could tell immediately she what was not displaying normal behaviors. I have seen and experienced what antibiotics or even meds on low doses can have huge impacts on her mental status. Yes we have been through encephalopathy and severe delirium (like someone else said - there are NO words to explain that to anyone). I was not as scared this time around because I knew what was to come and how to try to get her through it better. It truly frightened me to live through another 3 weeks of the severe neglect and care in our medical system. I was grateful to be able to be in moms private room - but heard so many husbands - wives and family questioning care. So though I would have loved for mom to go back to a rehab and see where she could improve if at all - this time I couldn’t do it. We came home with home health and are attempting assessments etc this week but I also will meet with the social worker to just start the process of a back of plan - wether hospice help etc as well as meet with her neuro and called in a in home dr on call service who ordered bloodwork for this week. It’s a huge 24/7 undertaking. It is constant care and at this level you can’t do it alone in home or out...whichever you decide is best for your family. But I also don’t want anyone to think that placing someone in a skilled nursing doesn’t come with almost the same amount of worry and to just prepare yourselves that you will still have to be huge advocates until a place seems to work to find out who your dad is so that they can actually help him achieve his best and not just guess and make their own choices for him. Again I do not want to scare you or discourage you but to make sure you as a family also decide how much you can still be there if you decide to place him as for awhile he will need you to 100% be on everything and advocate for him. Sending you and your family prayers and some answers into giving him as well as yourselves a better quality of life.🙏🏼
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Please don't guilt yourself into thinking a nursing home is a bad thing. Sometimes you feel guilty for not doing it sooner, because they're very skilled at handling these issues, and there you were flailing about trying to do your best for weeks or months.

Nursing homes are not the horrific places they were back in the day, and the staff members are well-trained. All this stuff that is so draining and exhausting for you just bounces off them, because they've seen it all before, they know how to handle every situation, and if they can't, they know what to do next. Lean on the people who would care for your dad, look into several places, and ask questions until you're satisfied. I think you'll be pleasantly surprised when the burden of caring FOR your dad is lifted, and you can just care ABOUT your dad instead.
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MY husband was hospitalized for sepsis. One of the drugs the have him made him totally nuts. He was I a room in the fifth floor, and he told me about the concert they had, and when it was over, they brought all equipment and semi trucks through his window and stored them behind the picture on the wall. When I looked to see what he was talking about, he yelled , "don't look at it. They'll know we are on to them."
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I am so sorry to read all this--and there are no pat answers for you.

Your dad's brain has somehow become 'rewired' probably due to all the trauma of surgery, infection, hospital delirium and who knows what else!

Obviously he is not the same man as he was--and no one can tell you if he's going to become the same man again.

I think you may have to accept that he is not.

If there is a chance for a break in your CG--as mentioned by several posters, take that chance for a time to re-group and see how he does. Putting placement in a NH of some kind does not mean you failed--it just is what it is. A sad set of events.

YOU ladies all need a huge break.

Please don't allow one moment of 'guilt' to enter into this, OK? You're not guilty of anything whatsoever, and moving dad to a better care situation is nothing to feel guilty about!

Good Luck--please do try to get a break! And give your mom a HUGE HUG for caring for a man she divorced! I know that I could not do that!
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I am traveling up tomorrow to take over my dad's care from my sister. My plan to show her all these replies when I see her.

She texted me a bit ago and told me of the awful things our father is saying to her. He calls her all kinds of names and insults her. He told her he hopes she passes away tonight. He asked her to turn off his bedroom light. Then immediately called out to our mother (who heard the conversation), that my sister turned off the light saying he had to lay in the dark. My sister went in to check on him eating his lunch earlier and he had made a mess with it. My sister asked if he had finished and he said yes even though he had only taken a couple of bites. As soon as my sister walked out with his mess of a plate, he yells to my mother that my sister took his food from him and only feeds him every 3-4 days. He hits her and kicks her and tells her he hates her. Sometimes after he lies, he laughs like it is a joke. He is outright lying about her to our mother and/or whoever is there. We just don't get it.

He is being so cruel to my sister who has idolized him all her life. The strange part of it is he knows what he is saying, he remembers it later, and he doesn't seem to care. Why? I KNOW without a doubt that he loves her.

My sister has been his primary caregiver since he first had his surgery months ago. It is so incredibly hurtful to her and I hurt for her.

Thank you for all the responses. I am learning from y'all that this is something that others deal with. I appreciate the kindness and will update when we make our next step.
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DILKimba Feb 2021
Give your sister a big long hug and remind her this is NOT the father who loves her dearly. This is a man who is sick and out of his right mind. She cannot take it personally. It is the dementia and the disease talking and not your father. Also remember that "hurting people hurt people". He is probably in pain, and scared on top of being out of his right mind. That drives the ugly words--even on a subconcious level. I'm so sorry you all are having to go through this. I agree it is time for placement.
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So sorry about your dad's condition. It sounds very serious and much too difficult for you and your family to handle at home for any length of time.

First, I would do some quick research on tips on how to deal with people with the behaviors your dad is exhibiting. A lot of it, you are going to have to remember that he can not help his behavior and that his brain is either broken or at least having serious issues. Try to diffuse the situation and give him canned/vague answers to his dementia fueled comments, etc. Try hard not to take it personally. I'm sure he is not purposely choosing to behave in this fashion.

He may very well need to be in a skilled nursing home. Not as punishment, but because he needs more care than you can provide. Perhaps he will improve a bit as time goes by. Or maybe he will not and, as someone else mentioned, you might have to look into palliative/hospice type care.

Let us know how your family meeting type thing goes tomorrow.
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Guilt belongs to felons. Not to people who are family trying to do their best. What you mean is another G word. That word is grief. I don't really care what you promised because you were not faced then with what you are faced with now.
Placement is the only answer. You are a human being with human needs for your own life, and with human limitations. You aren't a SAINT. If you were a Saint you would be filled with arrows and sent directly to heaven where you would spend eternity trying to take care of EVERYONE in the world.
I am sorry Becca. This just doesn't look doable.
This isn't about love. This isn't about promises. This isn't about guilt.
This is about the way things must be in an imperfect world.
One wonders how much can be visited on someone looking at your post to us; it looks like the woes of a modern day Job.
If the MDs are correct and even IV antibiotics will not rid this poor gentleman of this condition, then this is time limited in any case, because IV antibiotics are unlikely to be a long term answer; soon enough you will be looking at palliative care and Hospice. I suggest it be in-facility care. I am so dreadfully sorry.
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First things first. His BEHAVIOR right now is NOT because he doesn’t love you, or because you’ve done something wrong.

Second thing, possibly even more important than the first- out of your love for them, you made a promise to your parents that should NEVER be offered, and many instances, should NEVER be kept.

It is NEVER necessary to promise parents that you will “never put them in a home”, and in addition, it may in fact be a DECISION that will give them a safe and comfortable life.

NO ONE EVER has any idea how difficult it is to care full time for a dementia patient until it becomes their responsibility, and care needs can change on a dime.

SO- GIVE UP THE GUILT. Your job going forward is to figure out the best care plan you can that will meet your dad’s needs in the safest and most comfortable and pleasant way possible, then DO IT.

You know that if he he were well and thinking clearly he would want his Loved Ones to help him arrange good care for himself, BUT ALSO to continue to live comfortable and pleasant lives as they did before he got sick.

Start tomorrow doing online research into care ideas INCLUDING local residential care centers, part time caregivers, and whatever other geriatric support services you can come up with.

Check his insurance and Social Security and any pension he might have earned in the past.

You will start to figure out how to form a plan, and life will move on for all of you. DON’T EXPECT that everything will work out perfectly, but make decisions with love and respect for him.

Come back when you’ve gotten some ideas, and you’ll ALWAYS find someone here to discuss them with you!
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BeccaWNC Feb 2021
Thank you for your for responding and your encouraging words. We are definitely going to be making some decisions tomorrow.
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First off, I'm so sorry for what you are all going through. I know how awful it is to see your father in THIS condition. Hospital delirium can't even be explained to someone.......you have to witness it with your own eyes to believe such a thing is possible. I've seen it in my mother when she was 92 and hospitalized with pneumonia; she was seeing mice running on the floor and then trying to 'pack her belongings' into the paper wrapper the utensils come in on the food tray. The delirium did clear up after she was released from REHAB 21 days later.

Your father is seriously ill now; open heart surgery is very hard on the body, then to add infection complications & sepsis into the mix is even worse. That he's not a candidate for another surgery thrusts him into another whole category of care needs. To me, this is Skilled Nursing material, nothing less. For you all to have 'promised' him that you'd never 'put him in a home' is something nobody should ever ever do, for obvious reasons. Things happen that are out of everyone's control. Health can deteriorate to THIS degree overnight, and then what? Promises need to be broken and guilt should play NO part in decisions that have to be made moving forward.

Are you or your mother qualified or capable of caring for a man who needs THIS level of care? Are either of you nurses or in the medical field? At the very, very least, your father needs Rehab for as long as Medicare will pay for it..............sometimes 100 days will be paid for, when it's warranted. Has that option been discussed with his doctors? That would be my FIRST discussion with his care team. That and what his long term prognosis is, and what their opinion is for long term care options. Obviously, your mother can't care for him alone, AND they're divorced!

His dementia may or may not improve. Nobody can answer that question for you, really, not even his doctors. I'd be pushing for rehab myself, and let him be tended to in a Skilled Nursing Facility for NOW, to get him back to a good baseline health status at least, and THEN see how he's doing. It sounds like he was released back HOME in bad shape, which is too much for your mother to deal with, being that she's in bad health herself. And you live far away.

So see about rehab. If not, look into in-home help with a CNA or caregiver for 4 hours a day. If he improves, great. If not, long term care in a Skilled Nursing Facility is the best answer unless you have the funds for 24/7 in home care givers to come in daily to care for him. Most do not.

Wishing you the best of luck with a very difficult situation.
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BeccaWNC Feb 2021
Thank you for responding. Yeah, my dad has some episodes like your mom. Like he asked me to cover him with the blanket but got mad because he thought I was covering him with newspapers.

We really seriously considered a SNF both times he was discharged. The first time, we were worried if we put him in rehab, his delirium would only get worse so we rehabbed him at home. It was extremely difficult but it worked for the most part. This second time, we considered it at the recommendation of the doctors. But a couple of days before discharge, the doctors told us they felt the best place for him to recover from the delirium was to bring him home so he was in his own home surroundings. It was hard the first time around but we never imagined it would be this hard the second time around.

None of us are qualified for this level of care. My sister and I have some experience working in the medical field but not to this degree. Right now, the VA is paying for 3 hours a day of in-home care, but when that 3 hours is over, it isn't any better for us. It is more like a respite which we are all very appreciative of. And yes, his insurance will pay for 120 days of in-facility care with the possibility of a 120 day extension after re-evaluation.

On that note, when he doesn't get his way, or he feels like we aren't tending to him enough, he tells us to call the VA to come get him so he can live there. We haven't done that because that is the one place he always told us to never put him. He threatens to call the police if he doesn't get his way. It is awful. He doesn't understand that we are doing everything in our power to care for him and if we didn't care, we would have just sent him away without trying.

I think we know in our heart of hearts we will have to hand this over to a SNF. It is just so incredibly difficult. On top of the decision itself being a tough one, the fact that none of these facilities are not allowing visitors because of the pandemic, makes it all the more difficult. With what seems like a diminished mental capacity, I am worried he will think we just abandoned him.
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I am so sorry for what you are all going though.

Infection can cause awful confusion. But so can some drugs. With the past history of TIA I am wondering about the possibility of further mini strokes too?

Can you get his Doctor to visit (or a video appoitment)? For a thorough look at him?

Basically if his care needs are too high at home right now he may need to go back into hospital.

Forgot all that *promise* & guilt cr@p for now about care homes. That's a later discussion - there will be help on that topic later.

Right now your Dad is in crises, so just deal with the here & now.
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BeccaWNC Feb 2021
Thank you for responding. I wondered about undetected mini strokes too. We did have a video appointment with his PCP on Friday. She first suggested we take him to the ER and have him evaluated for possible inpatient care in the geriatric psychiatric floor. However, because of Covid, they aren't taking geriatric patients right now. So she suggested trying a couple of new meds to help with the sleep which have helped. We do have an appointment with a geriatric psychiatrist this week but I don't know that our sanity will last all week. I know it is about him, but as his caregivers, we feel like our mental health is suffering too. And we feel guilty about even feeling that way.
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I also want to add that my dad has not been diagnosed with dementia as this is all brand new in the last few weeks. We just keep asking ourselves, how can it be dementia when it just started but shows so many symptoms all at once?

Also, the first week, he couldn't sleep for more than 10-15 minutes at a time. We finally got a medication to help with that. He had the same issue in the hospital and they treated him with Zyprexa, Klonopin, and Haldol. Those meds just made him combative and even now, he will hit or kick one of us even though he isn't on those meds anymore. All he wants to do is lay in the bed and sleep most of the time. But if he isn't sleeping, he is calling on us literally every 5-15 minutes....and I would say more like every 5 minutes.
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