Husband's Reaction to Caregiver

Mitsu2 · March 7

Two weeks ago, we finally got a caregiver for 30 hours per week through Medicaid HCBS. The caregiver is very helpful, attentive and engages really well with my husband. I tried a few short trips of an hour or so, like grocery shopping, to see how he reacted to being alone with her. It went well, so when I had a dental emergency this week, I was feeling confident about the situation.

Unfortunately, I got a call from the caregiver right at the end of the appointment. He was agitated, yelling at her and our dog, telling her to take her dog and get out of the house. He took a dining room chair and slammed it repeatedly on the floor. Then he started to leave out the front door and became enraged when she tried to persuade him to come back in the house. He then went inside and locked her and the dog out in the rain. When I came home and got everyone back in the house, he was friendly, had no memory of any of it and the rest of the day was fine.

I had a follow up appointment a few days later. I talked with the caregiver about canceling, but she wanted to try. I gave him his Risperidone earlier in the day to see if that would help. It wasn't nearly as bad as the first appointment, but he was still agitated, angry with our dog, and wandered in the yard. The back gates are locked, so it's safe for him to wander there.

I wanted to try home based services, and feel like we have a very good caregiver. But it seems like he needs two people taking care of him most of the time. I've been able to get more done with her here, like cleaning the garage, taking a shower, and doing the taxes, but I don't feel like I could meet up with friends, or just go for a walk. He doesn't remember who the caregiver is from one day to the next, but is accepting when I say she's our helper.

Is this a period of adjustment, or a sign that his dementia has progressed past the point of home based services? He had an assessment done 5 months ago that showed him at stage 6.2, and he's definitely worse. It's hard to manage when She's not here, and he wakes me up between 3 and 4 am almost every day. And now I also need a root canal done!

Timmyd · March 7

We are using a private pay caregiver so we have the same woman each visit. We started at 15 hours a week and are now around 20 hours a week. Going from zero to 30 hours a week seems like a big transition. We did not have so much an adjustment period but rather fairly regular "rough patches". Our rough moments do not sound as difficult as yours, but they are similar. I would say as long as you feel you are benefiting from the companion, and the caregiver is willing and able to manage the difficult moments, you should continue. With ALZ, things are going to change and that could mean it gets better. I would want a really large sample size of many months of sustained difficulties before giving up.

For me, I really value the free time I get from the caregiver but it was hard thinking about what might be going on back home while I am out. Ultimately however, I cannot treat minimizing DW's agitation and distress as the top and only priority in my life. I have to accept that my priorities also matter and I am going to at times make decisions that are in my interest at the possible expense of DW's contentment.

annie51 · March 7

I agree with everything @Timmyd says. If you’re lucky enough that the caregiver is willing to try again, it’s worth it. It may just take time to adjust. If I was leaving DH with a caregiver to go to an appointment or something where I couldn’t get home right away, I asked a neighborhood friend that was pretty good at calming him down if she could be a backup just in case he kicked the caregiver out (he did do that once but I was close by in a coffee shop and I came home right away while she waited outside). By having a backup person available there was someone they could call if he got that bad and I didn’t need to leave my appointment in the middle of it. Paid caregivers would not (or at least SHOULD not) leave him unattended according to their policy.

The more time you get to yourself, the more you will be able to manage his care when you’re alone. As Timmy says, your priorities are important too!

Victoriaredux · March 7

A few things -Has he seen a geri-psych- meds may help- especially to try to get him to sleep through the night. Wrecking your sleep will flatten you out .

Please watch him and the dog, a pet shouldn't have to suffer, sometimes rehoming is the kind thing to do if the PWD is unkind , over feeds etc .

The backyard has locked gates - can you put a simple lock above eye level on the front door to keep him from trying to exit that way? And make locking the back door difficult for him so he can't lock the caregiver out again?

When is he past home care- when you say it is time - keeping you well is his best way to stay safe , healthy and loved.

Bowerbird · March 7

It sounds as though this was a case of show timing, where he was temporarily able to mask his symptoms to appear "normal" with the caregiver. When he could no longer maintain this, he had a catastrophic reaction or rather an overreaction because his system was overwhelmed.

If he is at Stage 6.2, you may want to start thinking about placing him in Memory Care, so that you do not endanger your own health by becoming exhausted and overwhelmed as his caretaker. This is a progressive disease and taking care of him will not get any easier, only more difficult.

White Crane · March 7

Hi, Mitsu2, I'm sorry you had such an upsetting experience. My DH went through a period of adjustment when caregivers came in. I remember one time when our daughter was visiting and she and I were going out to lunch. He hollered at us and waved his cane around and followed us out the door screaming at us all the way down the sidewalk to the car. The caregiver waved us on and we left. Thankfully, she was able to get him back inside but only after walking outside with him a bit to calm him down. He eventually calmed down and it was easier to leave. I know it's hard but keep trying. You need to get out and be away from the stress and takea care of yourself. Talk to your DH's doctor if this behavior keeps up.

Karen711 · March 8

It seems worth continuing to try with current caregiver since they have hit it off ok except for this one incident. The show timing theory makes sense and perhaps as he gets to know her he’ll be more comfortable being “himself”. Also, if you can continue to go out he may adjust to you being gone and develop a deeper connection possibly with the caregiver. I would strongly consider getting a couple of lock boxes with spare keys for the front and back yard areas. Is there a family member that can be around also on the root canal day?
Keep us posted!

Jeff H · March 8

A good caregiver is gold. One willing to try again is golden. I have my 24-year-old daughter at home that works that can give me an hour of respite occasionally. When I leave, I am cringing that there might be something going on at home that I don't know about. Even leaving for an hour I really don't get any respite because I'm still worried about what's going on at home. God, I hate this disease!

Mitsu2 I hope you can find some peace.🙏

SDianeL · March 8

I would ask for his meds to be adjusted or changed. No reason for him to be agitated or aggressive.

Mitsu2 · March 8

https://alzconnected.org/discussion/comment/267624#Comment_267624

Thanks for your comment. I also thought that it was a big change and asked for a gradual transition. I was told that because it's a Medicaid program, it's all or nothing. If I didn't take the 30 hours, we'd lose all our services.

Mitsu2 · March 8

My son can provide backup only on Mondays and I have no one else. If this hadn't been a dental emergency, I would have waited, but for some reason, Monday appointments are hard to get. I just scheduled all of my necessary medical appointment on a series of Mondays through July.

Mitsu2 · March 8

My son is checking to see if he can get off work early on the root canal day. If not, I'll have to delay for another few weeks until I can get a Monday appointment, since he works a Tuesday though Friday schedule.

Mitsu2 · March 8

We see his doctor this Monday, and we'll talk about the agitation. He goes to a senior clinic at a university hospital and medical center, so they should have some options. She increased his Risperidone to 1.5 mg a few weeks ago, but he had muscle spasms so it had to be reduced back to 1 mg.

Mitsu2 · March 8

I should probably add that he's gotten just as agitated and aggressive with me and I've had to call police and family members when available.

Mitsu2 · March 8

https://alzconnected.org/discussion/comment/267626#Comment_267626

I'm monitoring the dog carefully, but it is a concern. I must admit if I had to rehome my 9 year old goldendoodle, I think I would lose any emotional stability that I have left.

Biggles · March 9

Compared to all these comments I feel a little pathetic. I have finally found a lovely 40ish male caregiver for my DH. 2 1/2 hours a week only. They have connected really well and yet it is still really difficult for me to leave him and him to leave me. I am a sailing instructor with Sailability in small dinghies. DH generally loves being around the sailing activity too, our past life. So this was the plan a caretaker while I sail. I have had the odd 1/2 hour and taken the dog for a run on the beach but the pull to be with my DH is so strong. I actually feel calmer when I am struggling to take him and our registered Schnoodle to the shops or the park. Shopping has lost its purpose, who cares about coffees or lunches and im tired of people telling me I need “me time”. Its just all too horrible. All the same I am hanging on to our caregiver of 2 1/2 hours a week and see if we can progress with this.

Karen711 · March 9

https://alzconnected.org/discussion/comment/267629#Comment_267629

As with you Brenda, my DW has also had a “period of adjustment” to get used to a caregiver. It has involved going through 6 different caregivers to find the right fit, and a trial and error period for me to find a peaceful way to leave the house when I need to get away without DW. She used to get so agitated and upset when I would leave without her, and be angry with me for extended periods (24 hours) after my return. I’ve learned to slip out with out telling her and for some reason this is by far the least upsetting for her to handle so far. Seems counter intuitive and took a while to figure out. Most times now she’s happy to see me when I return, and her bond with the caregiver is deep.
K

trottingalong · March 9

https://alzconnected.org/discussion/comment/267710#Comment_267710

After some thought, I think I’m more like you. I do get about 2 hours daily away from home to take care of my horse and possibly run an errand. I do treasure that time. Today was filling up my car since gas prices are rising daily here. I’m a homebody at heart and enjoy being home with my husband, even in stressful times. Yes, fatigue gets to me but honestly, I don’t know what I would do with myself if I had too much free time.

M5M · March 9

An extra thought while reading all this discussion about caregivers…..I have installed two cameras in our home and am really pleased, I feel more at ease when I am gone. There are numerous brand options, mine are very small and DH hasn't even noticed. He knows there is one in the living room, it allows me to check on him when I am gone, and I recently added one in the bedroom so I can see him coming from the bathroom, across the room, and getting into bed. Occasionally I check the cameras when the caregiver is there, just to be sure things are going well. The ones I have are from Wyze, they have excellent customer service and are very cost effective.

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