Should I try care at home or assisted living?

Went through last year with Dad having TBI issues. Mom insisted on bringing him home. They refused to get any in-home help. Numerous times it was suggested to get him into MC, but as he was still functional, we thought AL. AL wouldn't take him due to temper flare ups. Mom couldn't manage his medications. He had numerous falls. Mom had medical issues, compounded by the stress of watching him every minute. Ended with him locking her out of the house, and she finally had to drop him off at the ED and sign off that she wouldn't be taking him back home. He was sent to a psych hospital an hour away, where he developed Covid and was then sent to a hospital, where we couldn't visit. Since he had no PT/OT throughout this time, he was then bedridden and sent to hospice. So much pain and suffering when he should have just been sent to MC directly from his TBI hospital situation.
I am sharing this because you sound so much like my mom, when she brought him home against our wishes. She would never make the "hard choice" and kept waiting for "someone else" to make the decision for her, which wasn't going to happen. Once you do that, when the "emergency" occurs, and it will, you won't have any choice. He will be placed wherever there is a spot that the social worker can place him. If you have the luxury of finding an appropriate place now, I suggest you do so.

If you can find a facility that is closer I would transfer him there. It is entirely understandable and admirable that you are considering taking him home if a visit requires 8 hours of travel, but from the description of his condition I think you may be biting off more than you can chew. It is always harder to place someone after they are at your home. Think hard and look at alternative solutions before you move him to your home.

My mom was equally out of control during the period she understood her brain was deteriorating and she was trying to be independent. Horrible anger and a fall had me remove her from her home. At assisted living, far far suburbs in Pa, no memory care local. They identified her need for medication, in her case a low dose of quetiapine to calm her anxiety. A year later she is past the angry stage, has very short term memory and seems to be accepting or perhaps just doesn't know. Her mood is stable. We brought her here a month ago and all has been fine and easily managed. I had both my grandparents life their final years in my home 20 years ago. No dementia just very old and having made no plans. Again a fall triggered the move to my house. No facility where they could have lived together as the levels are care were so different.

If your husband has attacked three nurses does that not tell you something? He is not a candidate for at home living with a caregiver. In a facility there will ways be more than one person caring for him but at home what happens if caregiver is attacked and no one is around. You also say he's had a serious fall, so safety should also be considered. You shouldn't be driving him home especially on a long road trip, that also is not safe for either of you. The social worker at the facility he currently is in should makes arrangements to have him placed back somewhere near you and your family and that includes safe transport too. Unfortunately his mental condition will not get better only worse so the sooner you start on a plan the better. Best wishes.

jgmay57: Your husband requires placement in a memory care facility.

Your husband should be in a memory care facility.

How about discussing this situation with a Geriatric Psychiatrist to discuss whether or not your husband might need to spend some time in a psychiatric hospital with a possible move to memory care when his violent episodes can be sedated.

Protect yourself, too, his disease can kill you.

Hi, excuse me if I'm repeating someone's response below, but remember that your husband's care needs will only increase--that's the nature of dementia as I understand it. He needs a high level of care now, but it might help to think about placing him where he'll get the care he needs as the disease progresses, rather than have to suddenly scramble yourself (and confuse him more) if or when the next crisis happens. At this point, it's probably best to place him in the highest level of care he'll need as the disease progresses.

In my opinion, your time is best spent scrambling (let's face it) to find the resources you need to make this situation sustainable and safe (like a lawyer specializing in elder care?), as opposed to trying to meet the immediate needs, which sounds dangerous and too much for one person.

I had a client last year who blocked me on her basement step and would not move out of the way. She was deadset in her mind that I was stealing her stuff. Who wants trashbags, and depends? I was doing the laundry and she had been yelling and complaining about me all that day. I was so sick of it.

This lady was almost as tall as me and even though she was frail, I could have fallen down those steps and broke my neck. It came down to my safety and hers. Of course they tried to beg me back, but I was done with being abused verbally and it was bordering on physical abuse. These people are not safe in their homes and they become an endangerment to themselves and others especially when they go into sundowning mode. They won't mean to hurt you and it's part of the illness. However, my health got very bad afterwards and I'm still struggling a year later.

First off the fact that you don’t feel “safe” driving him back to PA makes it pretty clear he shouldn’t be in the house. You don’t have the expertise or physicality to manage his tendencies and he doesn’t have control o Er them. As much as he promises and believes that he can make and fulfill those promises to “be good” he has dementia and that means he has no actual control over his aggressive behavior at least a good portion of the time. It isn’t the same but at the height of my Lyme I would way over react to things sometimes going into a rage of sorts and knowing I was over reacting but not able to control it. It was scary and I didn’t know why I was doing that I just knew I couldn’t control it, until the Lyme specialist asked about Lyme rage and a light bulb went off for both my DH and I. I only tell you about this to demonstrate that even when someone is aware of what they are doing they can’t make promises about controlling whatever it is when their brain isn’t working properly.

If his behavior and the threat to your safety isn’t enough to make the decision factor in his safety, he has already spent 6+ weeks recovering from an accident that has left him with more brain injury. Even with full time 24 hr help at home I wouldn’t feel confident a safe and positive environment could be created for both of you. If I were in your shoes I would be looking for a memory care of some sort near your home in PA and “take him home” to PA just not the house you shared. Have you been living in Maine while has been in the hospital and rehab or have you been driving back and forth between Maine and PA?

As far as transporting him I would consult with the care team in Maine that is most familiar with his issues now. He may or may not be included in the meeting, often called a family meeting but I would include any other family members (your grown children perhaps, a sibling of his…) that are closely connected to the situation and support you and your husband. Ask the care team about when they feel he may be ready to move out of rehab and where they feel he should go next care wise. Ask them about the best way to move him, if you move him back to PA what method do they suggest for doing it, how will he transition to another care team, what needs to be in place and any other questions you might have now or during the meeting. There are a lot of logistics here and you need to put to rest any feelings of guilt and or sadness about not bringing him back to the home you shared if that isn’t the safest and most productive thing fo you as well as him.

I can only imagine how hard it has been the last 4 years but particularly the last 6 weeks knowing as I do how quickly that time passes with all the ups, downs and fires to put out, it’s hard to find time to breath much less think about all the huge decisions that come your way. Find some time to yourself even if it’s in the park across the street or by the window in a chair in the corner of some part of the facility. I know you are doing a great job simply by the fact that you are asking the question. Remember you are important here too.

As painful as it is, assisted living is the best thing for now. If he can control his behavior, they will keep him there. It’s a good way to see if he makes improvements over time and then perhaps come home. Head injuries take time to heal and no one knows how much his brain will heal to improve his behavior. Time will tell. Hopefully he won’t need medicine to control his behavior.

Based on the fall, he is no longer safe at home. A geriatric specialist may be needed before the move. First for medications to calm the behaviours and second to help determine if he can live in MC, SNF, or if he needs a psychiatric facility. You will also have to figure how to get him back to PA. Again, work with a doctor up in Maine.

If a person does not want to be in Assisted Living, and is belligerent and uncooperative, he will be kicked out and you will lose any money you put in up front. Assisted living can only handle cooperative people. My experience. He needs long term care. You may have to put a lien on your house to get it, but do not wait until he has ruined your heath. My experience.

Everyone will have an opinion and you must decide what’s best for you. In my story my wife broke her arm and ended up in a care facility. I was the worst experience ever. Poor care, financial fraud, and what’s worse is she got worse not better. Not every place is bad so do your research first. After that incident she is home with me. She has dementia and is bed bound. A nurse comes once a week and another comes once a week to bathe her. I feed her and change her diapers and keep her clean. I load her in the car and take her for medical appointments. My life has totally changed. I gave up my business and no longer work. I turn down work because I can not travel. I only leave the house to buy food. This is my life. Ask yourself are you ready to make that kind of commitment. Yes it’s easy to put her somewhere but if she still has lucid thoughts and ask yourself what would you want if that was you.

You need professional help transporting your husband anywhere and, definitely 8 hours away ! Do not attempt to transport him yourself driving; this is a significant safety hazard for many reasons for you both. Do not expect your husband to be rational nor cooperative; these are not the norm with dementia patients and, can change in the blink of an eye. The dementia pt does not have short term memory recall to even remember a direction not what they said. Please seek physician advice regarding professional transportation back to your home area if that is where you want to go.
Do not try to care for him at home unless you want to try it with 24/7 paid care providers in the home; and even then it may not work. Caring for a dementia pt in the home by yourself is a huge safety hazard for you and the pt. As much as you might like to be at home with your husband, please also consider what would happen if you became too I'll or injured to care for him? He cannot make decisions now nor will he be able to. A kind and loving step into a safe and better quality of life for you both may be to seriously have husband assessed for level of care needs( it sounds more like
" memory care " unit rather than ALF for him). Perhaps if finances allow choose a continuum of care place where he could be in level of care needed and you could be in yours ( or you in your home) and go to see him. He like most all pts. dementia and otherwise will try the guilt trip, anger to try and control the situation that ultimately they cannot control and cannot keep themselves safe, much less you !

Get help to get back to your geographic area . Do not drive him. And, already have a care place decided on for him to go directly to. Is he a veteran? If so, access VA for help.

I am caring for my 82 year old husband. I say this with love and compassion. Please, you have the opportunity for assisted living, grab it with both hands. This will provide professional care for your husband and you can focus on being his wife. The caregiver role is exhausting and his specific needs are beyond home care. Hugs to you. I know the pain of this chapter. Let professionals help you both.

I would get his doctor or another specialist to prescribe a drug to help the poor man with the severe sundowning. It’s cruel to let it go without any medication. I’ve seen it help a lot and make life easier for the patient and others around him. Seroquel can help among some other meds.

Everyone does better at home, but you would need a lot of help for that to work. To keep you both safe and healthy. Family, hone health staff, friends, volunteers, senior services and caregivers, so that you are both safe. . So sorry for your husband, for feeling he did something wrong. Their hostility is out of frustration and confusion. You obviously love him very much. If staying home clearly won't work, look into sonewhere close to you. Either a nursing home or adult family home. And then visit often, regular tines of the day. Times you two would enjoy and maybe during sundowners. That might help him to have a bright moment. It costs, but some adult family homes can accommodate spouses. To move hin, definitely have someone help you drive him. You may be able to hire a caregiver, if nothing else. Care.com might be a good resource. God bless!

It sure sounds like your husband needs more care than AL. I agree with those who recommend Memory Care. Your taking care of your husband at home would dangerous for your both. Volatile people even without Dementia and TBI are not able to avoid outbursts and often violent behavior.

I would have to agree with the others as it’s much easier to place someone with assistance than trying to do it on your own and it does sound like he will need more than an AL facility. We had reached a point where loved one could no longer be cared for at home and ended up in the hospital which in the end was a godsend Best of luck in whatever you decide

jgmay57,

Not at home, you don't even feel safe traveling with him. If you attempt a home trial from the rehab facility, you risk losing the opportunity to have him placed with the assistance that you now have available to you. Don't try it, for both of your sakes.

Personally, with someone so volatile, I wouldn't be looking at AL. Memory care may be the best option because they usually staff with ppl better trained to deal with complex mental health issues, which your husband certainly has.

You have to do what is best for both of you and having him at home is simply not an option.

I wish you strength and clarity in the decisions ahead.

Where will he receive the best hands-on care, have enough caregivers around the clock, and be safe (as well as those around him)?

A. Not at home.

My husband, of 40 years, has been my best advisor and therapist, helping me deal, with my parent’s increasing poor health, dementia, and three younger sisters. He has a brilliant saying that he has used often, over our lifetime….”step outside your body, and look at yourself, listen to what you’re saying, thinking, and you might realize the situation better”.

Please trust your gut intuition, that made you ask this question, probably knowing we’d say, what we’re all saying. It’s ok to make sure your man is taken care of, and IT DOES NOT have to be YOU, doing the taking care of, yourself. You matter too, your safety, and as said, promises are beyond your man now. Wishing you peace, and clarity of mind. Deb

Start by asking his doctor to medicate him for anxiety/agitation to calm him down. After a couple of weeks of medication, you will know if it is safe to take him home.

For your safety and his I think Memory Care NOT Assisted Living.
He can be medicated prior to the drive BUT medicating him would make him more of a fall risk.
Discuss with the discharge planner and or the Social Worker and see if medical transport would be the better option. Check with your Insurance company and see if it would be covered.
I would not suggest that you make this drive yourself, have someone go with you if you do transport him yourself.
AND..
He sits in the back seat.
Child lock (if you have one) engaged so he can not open the door unless you unlock it)
He sits in the rear passenger side NOT behind you.
He stays belted in his seat.
Position yourself so that he can not grab hold of your clothing, your hair or you.
(slide your seat up as far as you are comfortably able to drive.)

A word of caution.
Many facilities will not take a resident that has had a violent outburst in the past 60 some 90 days. When you are looking at facilities ask about this and you may have to have a doctor indicate that he is under care.

Read your letter and pretend someone else wrote it. What would you tell them? It's obvious that you are not safe with him, his track record so far gives every indication that if you bring him home, you will be the next one attacked. You know this. You don't feel safe. Do what you have to do.

I'd get him into Memory Care Assisted Living near your home; have him medically transported there for safety reasons. Have a geriatric psychiatrist evaluate him for proper medication to keep him calm, and go from there. You can't have him attacking staff in AL, or he'll be asked to leave. So that's where the psychiatrist comes in to help figure out the best meds to keep him calmer and less agitated in general, so attacks won't be an issue (hopefully).

Combining dementia with a TBI is a recipe for disaster, really. You decide to do what's best for BOTH of you, after taking care of him for 4 years and knowing what it's all about. He can't 'promise' you anything, really, b/c dementia is always changing and DH has no control over his behaviors. He can 'promise' you to behave from now until forever, but once he gets back home, all bets are off. That's the nature of dementia, and why it's best for all concerned to have him placed in a Memory Care AL where he can be with others in the same boat, and have activities to occupy him, doctors coming in to the facility to see him, meals served, etc. You can go there every day to see him if you'd like, and take on the role of being his wife again, instead of his exhausted caregiver.

Wishing you the best of luck moving forward.

He needs memory care, not assisted living. He has dementia with violence. No assisted living would want him because they can't handle those issues. You're in danger if you're alone with him. You should not drive him home, it would be a nightmare. You should not take him home on a plane or a train, that puts even more people in danger. He needs medical transport. Find a memory care facility, close to you or far from you, whichever you prefer. I'm very sorry, but this never gets better. Take care of yourself and realize he isn't who he used to be.

If a professional who knows your husband and his background has said that your safety is a concern, it is unfair to your husband to so much as consider returning him to your home.

From your description, his illnesses and injury have permanently deprived him of his ability to reason.

Now you must be the source of rational and reasonable decision making regarding his care. Do your best to accept this.

He cannot “promise” to perform in ways that he can no longer control. He may “sound” like his old self, but he is unable to maintain normalcy in a consistent way because of his other tragic conditions.

The most important thing you can do for him, is to take good care of yourself. PLEASE DO THAT.

Hardest decision ever! Find a place close to you because if he is attacking people he will attack you. I had my Daddy in a group home which I liked a lot better. The staff was knowledgeable about things I had no clue about. They kept me in the loop and if he had a problem, like getting out of bed in the middle of the night, they would call me and I would talk him back to bed. My Daddy was 250 lbs and 6.1. I couldn't handle him and he had ALZ.