Can he come home?

Jazzma

My sweet, loving husband (74 years old, late stage 5) came down with pneumonia last week and had to be taken to the emergency room. He experienced an emotional break and became violent to the point of breaking out of the restraints and having to be wrestled back by security. This continued for four days in the ER. The chaos of being in the ER contributed to his condition.

When he was finally moved to a hospital ward he immediately calmed down. He's been there six days now. The psychiatrist and doctor have experimented with various combinations and dosages of medications (Trazadone and Seroquil) and now he is sleeping well, eating well, ambulatory and back to his sweet funny self. His cognitive ability has dropped a lot -- most of his talk is nonsense -- but I can live with that.

My question for those of you who have been through this -- can I bring him back home? He was on no medications and just rolling a long a steady decline before this. Just beginning to see incontinence. Absolutely never (in his life and our 35-year marriage) violent. My family and friends insist that bringing him home is a mistake. My heart wants him here. I know that the decline will continue and there will be more crises no matter what we do. I still want him here.

Please give me your honest thoughts. Thank you so much.

trottingalong

My DH was in the hospital two weeks ago for 4 days. He had hospital delirium, which could be what your husband is experiencing. I even slept in the hospital bed with him to keep him calmer, Even though he thought we were in a really crummy motel room. He was also quite paranoid. He didn’t get violent, but he did not know where he was or what was going on. It scared me. I got him home and he pretty quickly reverted back to the point he was at prior to going into the hospital.

M1

So sorry you are dealing with this. Would asking for a hospice evaluation help? If they could do it while he is in the hospital, I wonder if it would affect your decision. If he's never been violent with you at home, I see no reason why that should start now. I think it's more an issue of how you are coping with everything else. Sounds like your family must be worried about you, too. I get that.

harshedbuzz

@Jazzma

Given that both an infection or hospital experience can trigger extreme behaviors-- I would trust your own gut on this with a proviso that you have a solid Plan B. It's a great sign that he calmed down once he was moved from the chaos of the ER and into a regular room and that aggression isn't his normal baseline.

I would check out MCFs and SNFs just in case you need one later.

HB

Jazzma

@harshedbuzz Showing my igorance, what is MCF and SNF?

AnderK

Out on a limb here but might this be the time to transition to the most probably inevitable outcome? This comes from a person who almost daily thinks that now is the time to transition him, but can't get there. While you follow your heart, listen to your mind. All the best in this most difficult time. Kathy

Jgirl57

(For jazzma) MCF is Memory Care Facility and SNF is Skilled Nursing Facility

ImMaggieMae

Jazzma, my husband is a year older than yours and went through a similar thing a couple years ago, although only a day in ER before being admitted to a hospital room. I can’t even imagine what your husband must have gone through being stuck in ER for 4 days. Mine pulled out his IV twice and had to be restrained so he couldn’t escape. This was when Covid restricted the amount of time they would allow me to stay there with him. They finally found the right medications and everything calmed considerably. Hospital delirium is a very real thing. Any time he has been in the hospital since that time, I stay there with him, sleeping in a reclining chair. He has never been violent other than pulling out the IV and trying to leave. I brought him home afterward and although his dementia has progressed he has never acted aggressively toward me or anyone else. Medications are essential to calm sundowning agitation, but he eats well and sleeps soundly all night.

I would not consider MC unless something were to happen to me health wise where I couldn’t care for him. Now, at stage 6 he requires 24/7 care. But it will be here in his own home. We do have a caregiver who comes 3 days a week for 4 hours. He got along with her from the beginning, about a year and a half ago, and gives me time to do shopping, pay bills and spend time on the phone arguing with insurance companies. I rented a hospital bed late last year since he can no longer handle the long staircase to our bedroom. I sleep on the couch next to him. We have had a physical therapist come to the house a couple times per week and for the next couple weeks. He does very well with her. I’m sure we will require more in home help as time goes on and he becomes less mobile. None of this is easy, but we do the best we can.

harshedbuzz

@Jazzma

@Jgirl57 is correct. There is a list of acronyms (titled Commonly Used Abbreviations) on the right side of your screen if you're on a laptop. If you're viewing on a phone, you can find it by scrolling down past the last post. It's not especially extensive, but it's a good start. Not sure about a tablet; I've not checked.

HB

Quilting brings calm

My thoughts are not in line with others here. You have been presented with an opportunity that others can’t seem to get at all costs. The opportunity to get him placed with the help of hospital social workers. The opportunity to get his medications tweaked at the same time. Many people can’t get this help when they need it. Can’t get anyone to listen to the fact that that just can’t be the caregiver any longer

You feel he is fine but your family and friends do not. Are you sure that they didn’t see signs that you didn’t before he got pneumonia? Sometimes primary caregivers miss signs because they are so busy being primary caregivers. I’d ask them for their concerns.

LilySue

I had to call 9-1-1 one time when my husband became too aggressive at home for me to handle. His behavior continued in the ER, pulling out IVs, etc. At that time i was too inexperienced to understand what might be going on with him, so I allowed the doctors to transfer him to a psychiatric unit which was the worst thing I could have done. It became their goal to drug him in order to calm any aggressive behavior. What I didn't know when he was admitted was that he had a UTI. His behavior declined significantly during the 11 days he was there, and I finally had to insist that he be discharged against the doctor's advice. A psychiatric unit is not the answer. I learned the hard way to check for a UTI. Knowing that would, I'm sure, have changed the trajectory of his dementia. He never regained feeding himself after coming home. He lost so much during that hospital stay.

gampiano

Having kept my husband at home until the end, I can say that I agree with Quilting Brings Calm. You should seize the opportunity for placement while it presents itself, and before you are so exhausted that your own health is in jeopardy. Stage 7 is so radically different that all the previous ones. It almost did me in. Just being honest here.

Jazzma

Thank you all so much. He was discharged today and came home. Within an hour there was poop on the upholstery even though he was wearing Depends. He wandered the house, garage, etc unable to tell me what he was looking for. So much worse than when he left for the hospital. I gave him Seroquel and Trazadone per doctor's orders and he's now asleep in bed beside me. It is wonderful to have him close again, but I am thinking much more about pursuing placement. I'll give it a bit longer. I can't imagine living like this for years to come.

ButterflyWings

https://alzconnected.org/discussion/68190/can-he-come-home

Sorry if I missed this, but do you have a diagnosis? Your post sounds like you are aware that he has dementia, is declining and just want to know if he will return to baseline after this experience. In our experience, yes, DH returned to baseline in a couple of days after getting meds (an antipsychotic and anti-depressant) and an antibiotic for UTI.

We have fortunately not had any violence at all, but there was aggression (words, anger, demands that I leave). It took major effort on my part to disappear any weapons or anything that could be weaponized. Also, to learn all I could about AD, and to follow recommendations (especially from this forum) to the letter about validation and de-escalation etc. Like your DH, mine overall is sweet, fairly easy to redirect and to care for.

I don't feel it is inevitable that a PWD must be placed in MC at some point. It depends. But QBC is not wrong either. Many caregivers go through the dramatic and dangerous roller coaster of out of control behaviors from LOs without Drs or family believing them about the need for a diagnosis and prescription support, etc.

If things escalate again, violence is one of those deal-breakers that can go really wrong for him or you - whether at home or in a facility, so getting a handle on the best med regime for him is key before taking him home. '

*Edited as I see your follow up post that you are both home. Hopefully in a few days he will be back to his baseline. I recommend crushing any meds that you can and stir them into his juice, applesauce, or pudding. That will be key to keeping him stable. And, I do hope any GI upset or hospital delirium subsides very soon. You must be exhausted. As you are observing, he may get back to baseline, but will still decline. And yes, behaviors, incontinence, pee and poop on furniture, endless laundry, and increasing effort on your part is the best we can look forward to. It just comes with the territory. Good idea to make sure your POAs etc. are in order, and to tour some MC's just in case. Even virtually perhaps to narrow down options for your Plan B.

Jazzma

https://alzconnected.org/discussion/comment/198596#Comment_198596

Thank you for your so thoughtful reply. Incontinence seems to be the biggest issue at this point, and I think I can deal with it. Pee and Poop don't scare me. Maybe if/when he is placed elsewhere I'll hire Stanley Steamer to clean everything.

He is so sweet and funny and just wonderful to have around, even when everything he says is nonsense. I'm so grateful to have more time with him at home. I was devastated when I thought all of this was gone.

trottingalong

https://alzconnected.org/discussion/comment/198582#Comment_198582

It can take a few days to revert back to baseline. Our hospital did not put him on new medications such as seroquel because they felt it could create more problems. That’s why I stayed with him in the hospital. He reverted back to baseline within a day,

Jazzma

Wow. Tonight -- his second night back from the hospital -- he is completely gonzo. Not violent or dangerous but completely crazy. Wants a hot dog. Wants to microwave his soda bottle. Stuffs the hotdog into the soda bottle. Wants to go to his brothers. Grabs a frying pan and a pair of boots and goes into the garage and climbs into the pickup because he is driving to his brothers (fortunately all keys are hidden). Wants to go to 'his house' (not here). Started ripping dollar bills in house. Tried to get him to sleep but he closes his eyes for 10 seconds and then is up and going again. He's had a dose of Seroquel (100mg) and 3 x 50 mg doses of Trazadone and it doesn't seem to be making a difference. I don't want to call help because he'll wind up in the emergency room (again), in restraints (again), and won't be accepted in a care facility.

I think he can move into memory care on Tuesday if I can make it til then. To be clear, he's not at all violent or frightening -- just vibrating with nervous energy.

ButterflyWings

Jazzma - this sounds so much like UTI behavior, but did you say they checked him for this and it was negative?

I'm so sorry this disease even exists, and that another family is going through the roller coaster and twilight zone that we caregivers know so well. Very glad he is not violent. I wonder if this is a medication reaction? Can you call the Dr. to get on-call guidance?

Also, for future reference, I found liquid Melatonin to be a life saver in moments that we needed to slow his escalation and for him, his Dr. approved 10 mg and higher once the 3mg dose did nothing. After slipping it into his water or juice DH would chill, then nap for an hour or so at least. Then he'd wake up a new man. Calmer and not remembering the wackiness.

Jazzma

https://alzconnected.org/discussion/comment/198680#Comment_198680

ButterflyWings (I love your name) -- they checked him for a UTI in the hospital but I suppose it could have come up in the last day using Depends. I'll try to reach an after-hours helpline.

ButterflyWings

@Jazzma - It took a couple of days for DH to get back to baseline and the hospital delirium was pretty serious, before that. I hope you can get an after hours call-back at least, to give you some support and guidance so you both can get some rest.

trottingalong

That sounds exactly like what happened 3 weeks ago with my DH. It came on rapidly and it was a UTI. I gave him a sedative and he got worse. At 3 am I took him to ER. I told ER I suspected UTI. I was poo pooed because he wasn’t showing other symptoms. They gave him so many tests. Finally they did a urine test and he had the UTI. The doctor came in and told me I was right, but she had suspected something else. I had never seen my DH like that.

trottingalong

Question. You said in the hospital they were experimenting with the drugs? Was he on any of those drugs prior to hospitalization?

jfkoc

Please go to a site like drugs.com and check for side effects and drug interactions.

Call your husband's Dr tomorrow morning. Have Plan B in place. Protect mattress and furniture.

I would not rush into placment. Hospitals are terrible for persons with dementia and it is quite possible things will return to "normal".

Please keep us updated when you can

ButterflyWings

I am recalling that Prednisone sends my DH absolutely off the rails. So much so that it is now in his records as DO NOT ADMINISTER. Just an example of things that might be administered in an ER or hospital that can trigger the kind of behavior you are seeing.

I agree with jfkoc that you may need to do some quick research on your own to troubleshoot what is in his system, while you also call the Dr. urgently.

Jazzma

He's on Trazodone and Seroquel. Serious interactions are rare (according to Drugs.com) but side effects of each match a lot of his afternoon/evening hyperactivity. I have a message into his doctor about discontinuing the meds but of course it's a 3-day weekend.

jfkoc

I AM NOT MEDICAL

I would consider reducing the dosage by cutting in half. Your pharmacist can give you info on this.

ImMaggieMae

This sounds like it could still be hospital delirium. 4 days in the ER before being admitted to the hospital would drive anyone to extremes. The medications did seem to work for a while. Maybe, along with delirium he’s experiencing sundowning. Like a few others have mentioned, it could also be a UTI that just came on. Do you have any home test strips? AZO test strips seem to be pretty accurate. They’re inexpensive and show results in about 2 minutes.

I hope you can reach an on call doctor who can offer help without telling you to go to ER. Urgent care clinics around here are good for testing for UTI’s, especially if you can bring in a urine sample with you.

Jazzma

I am losing it. DH is in pain again, the original reason for the ER visit that started all this. I called his primary care physician and they have no appointments in the entire clinic for 2 weeks. I DO NOT want to go back to the ER. I talked to Urgent Care and they recommend the ER. I've tried to call his hospitalists from his last visit but waited on hold for 20 minutes with no response. He can't lie down without jumping right back up in pain. This went on all last night with extreme delerium, peeing everywhere, etc. This morning he's a little calmer but still frenetic. I'm at my wit's end.

M1

Take him jazzma. You probably have very little choice here. There's not going to be much they can do without re-evaluating him. I'm so sorry......

ButterflyWings

I would have a hospice agency come to you and evaluate him. It is mainly to get in-home support as you need it without this kind of delay, if he qualifies. In this condition, with a recent ER visit he almost surely will. Then they can also follow him to MC if you decide to place him.

But hospice care is comfort care. They prioritize pain control and can coordinate everything you need so you don't have to try to do this all with 1 hand tied behind your back. Most times they will be there to evaluate him within 24 hours and their resident Dr. will make an admit or no admit decision to start services immediately if needed.

Jazzma

Thank you all for your support and suggestions. I have never been so tired, desperate and devastated.