Confusion and Stress when I am not here

bloomcar

Hello, I am new to this website so hopefully I'm in the right place. My husband is still mild to moderate state of Alzheimers and also has Vascular Dementia. This past year I have still been able to get away for a week-end or an over night trip to see friends but the last couple of times I've done this my husband gets very confused and starts calling me and everyone in the family wondering where I am. My kids offer to stay but they are not equipped to calm him down so it isn't that I can't get family members to help since his issue is me not being here. Is there a service that anyone knows of that is equipped to come in so I can occasionally get a break?

SusanB-dil

Hi bloomcar - welcome to 'here', but sorry for the reason. You've definitely come to the right place for support and hopefully, answers to your questions. MIL also has both.

Sometimes a memory care center can take a LO for what they call a respite break, and you may check to be able to get home service just temporarily.

bloomcar

Thanks so much. Very helpful

Kibbee

Earlier in DH’s journey, when his cognition was better and he was still managing all ADLs on his own, I paid a neighbor to check on him if I had to be gone overnight. She would come over first thing in the morning, then stop in every few hours, and again right before bedtime. That worked well, they enjoyed their visits and she enjoyed having a little extra money in her budget.

As DH’s condition declined his cognition slipped, and incontinence and falling became an issue. I needed more help than the kind neighbor could give. I used Care.com and was able to source and trial a few caregivers. One worked out well and is still helping us today, although she does not do overnights.

It might also be worthwhile asking friends if they know of anyone looking for caregiver work. I found my overnight caregiver through a friend whose mother has ALZ, and his nephew helped the family care for her. Nephew is now also helping me with DH, and it’s been a godsend.

Third idea would be to check with care facilities in your area and see if any of their staff may be looking to pick up extra hours. Just make sure management is OK with this, as some may not be.

bloomcar

Wonderful ideas thank you.

mommyandme (m&m)

The respite care at a facility is a great idea. We were doing long distance care for my mom and when 24/7 care needs were evident we extended the in home care from 8 hrs a day to 24. The service we used was too expensive but we were successful in hiring in a few folks from Care.com. If I were you and you hire in, regardless from where, get started now a few hours or days a week so when you are gone over nights your LO and the caregiver(s) will be familiar with each other and the routine.

You’re in the right place… Welcome!

harshedbuzz

Respite at a facility is always an option, but there are some conditions related to this that may make it less appealing.

For starters, it's expensive as most places require a minimum longer than the trips you've been taking. You may find a place that has a 2 week minimum, but most near me require a month starting at about $7K assuming there's an open room when you want one.

You would also need to go through the same paperwork as you would for a permanent admission. Where I live that's an interview with the DON to make sure he'd be a good candidate for them and a doctor's exam with TB testing before admission.

Plus, you'd need to set up his room, get his meds in blister packs if required and label all his clothes and belongings. This includes hearing aids and dentures if he uses them.

Most PWD moving into a facility do have a slight downturn in their cognition and abilities when removed from the familiarity of home and their routines. This may or may not become his new baseline. Most PWD will take a month or two to settle down and bond with their new caregivers. YMMV, but I felt it important to be on hand when we placed dad to assist in the transition, help him not feel abandoned and just in case something happened where decisions needed to be made.

TBH, unless your children are blithering idiots, I would take them up on their offer. I didn't have any dementia-whisperer skills when I first started caring for dad, but it wasn't long until I became at least as capable as mom was. In fact, because I wasn't as close to the situation and wasn't living it 24/7, I was able to bring a breezier spin on things which he responded to positively. Dad and I never had a particularly easy relationship, but caring for him as he regressed allowed me to enjoy the time with him that I wouldn't have had otherwise.

HB

Beachfan

bloomcar,

I have to second all that Harshbuzzed shared with you regarding respite, with facilities now possibly being more restrictive since COVID has never completely gone away.

I’m sorry to maybe be the first with unsettling advice for you, but you may have reached the point where leaving DH overnight or a few days is no longer feasible. Early on, my DH had an issue with my not being here; leaving him for a quick hair appt. or a dental check up always resulted in his asking, “Where is she?” I don’t think he recognized me as his wife, but he knew I was supposed to be with him. I soon realized that an overnight would be more trouble than it’s worth, regardless of the amount of planning and the familiarity of the caregiver. It was easier to stay home and stick to a routine.

13 years have passed since his diagnosis; he died in April. Looking back, now that I have the freedom to gather with friends or travel out of state to visit family, it doesn’t seem so bad, but at the time I thought I would drown in caregiving. There is light at the end of the tunnel, but the journey is horrible. I’m sorry. I wish you the best.