Refusing/protesting care from family members: what now?

mrahope

I have been having more and more trouble with DH and anger and agitation. Yesterday he had a "meltdown" involving throwing objects around the room. It was awful for me. I was both frightened and angry myself. He's also had an episode where he turned something on (the self-clean feature, I think) on the range and called me in a panic. This made both me and my DS and DDIL start to believe that he shouldn't be left at home alone for more than an hour.

This means I can manage to make it to the grocery store (less than an hour, as we live in a small town) and sometimes other brief errands, but any daytime activities for me are severely restricted. However, I sing in two musical groups and each has one rehearsal each week on different evenings. My DS has agreed to be around during those times. I feel like this is needed because I must turn off my phone so it won't interrupt the rehearsal. Today, he's protesting that he "doesn't want/need DS to 'watch' him". It's the only time I get away and each time is 2-3 hours. He's been nasty about it.

He has a history of refusing care. I tried two different caregivers in our other location, and he found fault with/discontinued both of them. I tried to get him to go to a day program, also, but he wasn't going to be with "those patients". Has anyone else had this kind of issue? What did you do? FWIW, he has been told he has "mild dementia" but his previous neurologist said he didn't think it was ALZ.

M1

I so sympathize mra. You are absolutely correct that he can no longer be left alone. Sounds like you have two options: either you give up your music programs, or you start researching other care for him. It is so sad and so difficult to have a spouse who does not acquiesce to this willingly. BTDT.

Have you researched any memory care option? It sounds to me that you should. It was at about this point in our journey that I did the same; I could not find home help in our rural area, but my partner would have been extremely unlikely to accept it anyway, and would have had the same reaction to a day program. She was wandering at night, overfeeding our animals, not recognizing me, getting into trouble if left alone even for a few minutes, falling for scams and solicitations of all sorts, and threatening aggression when I would not let her drive.

The other thing you should be completely prepared to do is to get him admitted to a geriatric psych facility for medication management to prevent the aggression and outbursts. I had to do this, too, and it was very difficult--but very necessary on so many fronts, including the fact that no memory care program would have accepted her without doing that first. You should talk to his doctor right away about yesterday's episode and see what they suggest. Any more episodes, and you should take the 911 route. I avoided that by taking her to her doctor's office, and he sent her to the emergency room on the pretext that her blood pressure was high. I of course told the true story to the folks in the ER. She hasn't been home since, which will be two years next month.

Gig Harbor

Next time your son comes over have him announce that he is there to help you. Have him start vacuuming the house and you make your escape. After 20 minutes or so have him announce that he needs a break and get out ice cream to make a Sunday. Have his ask your husband to join him and just start talking like it is a normal day. Maybe this will distract your husband. They can then move on to watching TV or ?.

Gig Harbor

JeriLynn66

I’m sorry you are dealing with this and agree that the Doctor should be notified. And sadly, an hour alone seems an awfully long time with ample opportunity for unsafe outcomes. I’m sorry it’s so hard

harshedbuzz

@mrahope

My dad was the same. And it was hard for my mom as she was previously a homebody but felt trapped and claustrophobic stuck in the house with dad.

Whenever I stayed with him it was either a "social visit" or mom needed me to do some task for her-- mom needed me to measure windows for curtains, find her missing vegetable peeler, drop off soup I made,borrow something, etc. Sometimes, I'd bring my laptop and chill out in the kitchen and he'd forget I was even there. Sometimes, I'd go into the house, 5 minutes after she left and say I was looking for her.

HB

mrahope

Thanks so much for your suggestions, everyone. Thanks to DDIL, we have an appointment to tour a MC facility next Saturday. She also called the local police to find out how they would handle it if I called 911 during an episode. They assured her that they were quite familiar with situations like ours and that I should not hesitate to call if things become threatening. She even gave them his name so that they would know what to call him should they show up.

He's had these episodes before. The last one was just after Thanksgiving last year. I'm also going to send a message to his neurologist to let him know that this is occurring and to see what he would recommend. TBH, I don't have much hope that they'll have much to offer medically.

At this point, I feel like I should never have to be as frightened as I have been these last few days.

mommafour

mrahope - this is similar to the experience I had with my DH. A year ago, he was having episodes of anger and delusions a couple of times per week. I was frightened enough to lock myself in the bathroom with my cell-phone until he was calm. His doctor prescribed Seroquel (quetiapine). After a couple of dosage adjustments, it has made a huge difference. He hasn't had any episodes of anger or delusions since last April. There is a warning that comes with use of this mediation for elderly dementia patients, but the risk was low in DH's case.

DH also refuses any assistance. He dropped out of Adult Day Care because, just like your DH, he didn't want to hang out with "those people" and I'm certain he would refuse in-home caregiver help. Recently, I had to retire a couple of years sooner than planned to provide full time care. I am very bored and feel trapped at home. It's been a tough adjustment for me. I thought I could escape for short periods of time to run errands, until DH opened the front door and let our 2 dogs run freely down the street (I finally got them back). I'm planning to hire an in-home caregiver for a few hours per week but I'm waiting until DH is just a little further down the Alzheimer's path that he won't understand it enough to object. I think that time is coming during this year.

M1

You are absolutely right mra. I went through this too, as many others have. It's heartbreaking. Be prepared though that he still may need hospitalization and stabilization on medication before MC will accept him. If you don't tell them about this behavior and he had a tantrum, or attacked an aide or another resident, he'd be expelled in a hot second.

I expect the right thing to do here is to get him hospitalized and then placed from there.

mrahope

Thanks for all your comments. You are so right, M1. I would never even think of concealing this behavior from any place or person involved in his care. It's astonishingly frightening for me.

AnderK

Wow. I too limit my excursions ( excursions sound so glamorous...like a trip to HyVee, the drugstore, and getting gas is an excursion!) to an hour or hour and a half. I am not concerned about him taking off, or being violent. I am concerned about him falling and laying on the floor til I get back. (He will not wear or use a device).

Listen to your fear. You should never be put into the very frightful situations that you have been. We put up with things as caretakers that we would never have put up with PD (pre dementia). Or from a stranger. Be careful for yourself.

Kathy