My husband is 69 and has had dementia for 4 years. He can be volatile and obnoxious at times. Recently he fell down a flight of stairs and sustained a brain injury as well as broke all his ribs in multiple places on one side. He was hospitalized for 3 weeks and then moved to a rehab for the past 3 weeks. He is stir crazy and no longer receiving rehab but just stuck in the facility. He has attacked nurses 3 different times and has moderate to severe sundowning. The facility is in Maine where the accident occurred but we live in PA. I have been told that assisted living is best for his safety and mine. He is sometimes rational and begs to be taken home, promises to behave, etc. His dementia is definitely worse than before the fall. I am torn about the best next move. All is complicated by the fact that we live 8 hours away. I do not feel safe driving him home. How does one decide?
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.
Protect yourself, too, his disease can kill you.
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.
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.
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.
You are a very honorable man and a devoted husband to have given up these years of your life to lovingly care for your wife.
My heart goes out to you. I hope that a time comes when you have a good option for placing your wife in care so that you can live your remaining years for your own self and find some enjoyment in life.
As her needs change and her needs increase, perhaps you can revisit the whole huge issue of placing your beloved in a care setting again. There may be options that you haven't yet sought that are within a reasonable driving distance. perhaps adult day care would lessen your burden (although you don't see it that way) and allow you some time and also insight into the workings of a different care facility; you may find a good one.
Blessings -
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.
Hugs to all.
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.
A. Not at home.
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
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.
Emotions can make decision making so hard.
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.
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.
No exceptions.