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!
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.
BeccaWNC: I wish you well with your father.
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.
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
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.
He can also get delirium from dehydration.
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.
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
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).
Has Dad improved at all? Have you & your sister got any more support?
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.🙏🏼
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.
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!
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.
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.
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.
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!
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.
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.
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.
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.