My husband has FTD and has lost most mobility. He can use a walker but often has to be backed up by wheelchair. I am up and down all night helping with the urinal. He only wants me with him. I have a wonderful daytime caregiver but now I have to find overnight help who can handle his rages. I am tired/exhausted but he doesn’t see it. How can I get him to cooperate with someone else at night? I need a break.
Is your husband currently on any meds for anxiety/agitation? If not, please consult with his doctor about this. It may not take care of the behavior completely, but will lessen it during the day.
Has he been transitioned to disposable briefs (at least at night)? If not, do this. There is such a thing as anti-strip clothing so he can't take them off on his own (if this is something he does or may do).
He doesn't see your exhaustion because he can't. Dementia robs people of their ability to have empathy.
I don't know where you stand in terms of facility care but I think you are getting a glimpse of what it will continue to be like with him, and at some point you have to protect yourself and mental/emotional wellbeing. FYI if you're paying for 24/7 aids this will be more expensive than MC or LTC.
Since he has mobility issues, has he been assessed for LTC by his doctor? This is because in most states Medicaid DOES pay for LTC but he has to qualify both financially and medically (LTC). Please begin to explore this option.
Yes, you need a break. No, he probably won't cooperate unless you and his doctor can work to solve his nighttime issues. Have you tried sleep medications for him, either OTC or prescriptions? My family used Tylenol PM and worked to a degree (I think people get a tolerance to it?) His daytime caregiver should be doing mental and physical exercises with him to tire him out so he will sleep more fitfully (like playing games, moving his arms, reading out loud, etc).
Has he been checked for UTI? Does he have a prostrate problem? Some of these medical issues have solutions. UTIs can be dangerous because if left untreated can turn septic. Antibiotics will be required. Often the only symptoms are behavioral and cognitive.
He is not going to get better. Perhaps you need to face the issue head on, check on Medicaid. If you can afford it in the meantime self pay, a facility will cost much less than at home care. I know, been there tried that still no sleep.
Do you feel that the time may be closing in where you cannot continue to do home care, and are you exploring options?
I am so very sorry you are going through this. This is a terribly difficult dementia.
My husband tried every bladder medication out there and even had Botox put in his bladder to try and help and when all else failed his urologist recommended a supra pubic catheter be put in.
That was a Godsend as it allowed my husband and I to get a full nights sleep and I only had to empty his catheter bag once in the morning and again before bed.
You may want to talk to his urologist about that.
And in the meantime, please make sure that your husband is wearing Depends and you can even put a extra pad in them to absorb more.
This is hard, I know, but you must take care of yourself and get proper rest as you don't want to be in the statistic of 40% of caregivers caring for someone with dementia will die before their loved one from stress related issues.
So I ask you again: why is he making decisions?
This happens very often in family caregiving situations. The needy sick person is obeyed because the family caregiver is usually already on the brink of collapsing from exhaustion themselves and just doesn't have the strength to deal with the tantrums or backlash that comes with refusing.
He has been treated for URIs, - just off IV antibiotics at home. He takes Ativan for anxiety. Is on antidepressant, takes a nightly sleeping pill. He often sleeps or just wants to be in bed . His mobility issue and horrible arthritis in his knee makes movement painful. I understand his anger and frustration in losing all his independence, but the constant yelling, refusing to listen to anyone trying to help him is beyond my ability to handle. I understand you all saying it’s time to considered a care facility, but this will kill him. We have been so close and so attached I know he wouldn’t survive this. It would be cruel. I keep trying to put nighttime care in place and each time he refuses any help and tells them to leave! I guess it’s only ok if I’m up all night! I can’t sustain this. You say I can’t let him to make these decisions- I just have to hire someone and pray a caregiver can wait it out. I’ve never felt so tired or trapped or confused. With no family, I’m on my own.
I have always said that the idea, plan to keep someone at home is the right thing to do BUT if it becomes unmanageable or unsafe then other plans MUST be made.
Obviously in your case 1 or even 2 people can not manage your husband at home.
For your safety and that is physical safety, mental and emotional safety you need to begin looking at placing him in Memory Care.
...And I just heard you say..."He is not going to like that" and you are right. But what would he have told you 20 years ago if he knew the future and how difficult it would be for you to care for him. What would he want you to do? What if this were your dad what would you tell your mom, or your best friend if she were going through the same thing?
If your husband is a Veteran he may qualify for some help or benefits from the VA. If he is a Veteran contact the local Veteran's Assistance Commission and they can help determine if he qualifies for any help.
You can contact your local area Agency on Aging and see what programs are in your area.
You might want to look into Adult Day Programs. That would give you a break, give him a break. It is amazing what a few days of Day Care can do, it is a brief respite that can make the week so much easier to get through.
If you have not talked to his doctor about the outbursts this is something that you need to inform them about. There are medications that can help. HOWEVER he will probably have to forego the walker as almost any medication that can help with anxiety my make him more apt to fall.
https://www.agingcare.com/questions/my-82-year-old-husband-has-ftd-his-obsessioncompulsion-is-sex-he-is-unrelenting-in-his-desire-he-can-476711.htm
The above is a post from Aug 2022. Then he was very aggressive with sex. U were told then, time to place him. If you are too in ur 80s u can't deal with not having any sleep. He can no longer be reasoned with and can be a danger. You would not believe how strong people suffering from Dementia can get.
I agree that you need some respite at least.
He will simply have to get used to another person helping him at night.
I was a homecare CNA for 25 years. I've seen your situation play out many, many times. Your husband is not the first person who will only "allow" a certain person to do for them. This is a very common issue with family caregivers.
Let me ask you a question. Will you let your husband's fussing and refusal to "allow" outside help drive you to exhaustion where you end up hospitalized? What happens to him then? Think about that.
He has dementia and is not calling the shots anymore. He doesn't get to decide who he will allow. You are the one who decides this now.
You bring in a night time caregiver and leave them to it. Your husband will just have to get used to it. Don't micromanage when they are on shift either. You find a different room to sleep in and then put in ear plugs if you have to. He will get used to it. For the first couple of weeks don't even check on him directly overnight. Do this indirectly. This way he will get familar with the aide.
If his agitation or anxiety gets bad, his doctor can prescribe anti-anxiety medication to keep him calm.
Bring in the night time aide. It might be a bit of a bumpy road for the first couple of weeks but stay strong and you will be glad you did it.
My heart goes out to you.
You tell us that your husband would not survive placement.
But at this point YOU may not survive not placing him, and then he will truly be alone in his agony.
The path forward doesn't hold a lot that is good for your husband. I understand you don't want to lose him, but at this point, his going on will be a crucible for you both, and in many aspects you have already lost him, or are quickly doing so.
We on Forum have seen many caregivers become both physically and mentally iill with their insistence that they can continue on in this care. That leaves their loved one truly alone, without even there visits.
I am so very sorry. I still believe that there is no answer here other than placement, for--as Grandma says--this is NOT sustainable. No matter how heroic you are, this cannot long go on.