Burned Out(1)

LunaCat

My DH was diagnosed with Parkinson’s and LBD in 2017. We’re both 68 now. In 2019 we moved to a new state to be near better medical care. We have no children and no close family members. I am his only caregiver. He is very capable physically, even walks two miles every day we can, in spite of having a knee replacement in March. He needs no help with hygiene or dressing. Mentally though, he’s a stage 5+.

Since we moved just prior to the pandemic, we did not have an opportunity to make many community connections. That means it was all me 24/7 through the last year of pandemic restrictions. Now that things are opening up a bit, I thought it was time to get back out there. The isolation took its toll on him. He tends to sleep most of the day. I knew he would benefit from socialization and activities outside the home. I thought a little time away from each other would be good. Truthfully, I needed a little alone time. An hour or so to do the weekly grocery shopping was not enough. 

The answer - ADC. He was going two days a week for five hours. During the first week, I spent the time napping (without keeping one eye and one ear open) and deep cleaning my house. The second week I spent running all the errands I couldn’t do with him. We’re into the third week and he’s refusing to go. He says he doesn’t understand why he has to go to “that prison”. Of course there’s no reasoning with him. Having someone come in won’t work. In his words, “He’s a grown man and doesn’t need a babysitter.”

Further complicating the situation is my 92 yo mother. My brother cares for her in another state - an airplane ride away. She was recently admitted to the hospital suffering from VD and a UTI. She’s asked to see me. I haven’t seen her in years though we talk often. My DH says he doesn’t want to stop me from going. I broached the subject of respite care, but he won’t go to any “home”. 

The house, the finances, the housekeeping, the meals (planning, cooking and cleaning), everything that goes along with caregiving and doing it all with a good attitude is getting to me. I’m pretty self aware and I see myself at times being resentful, angry, apathetic and my body is sending me messages that aren’t good. 

I’m sure most of this is venting and I’ll probably get over this hump, but I could use some advice on getting my DH out and about. Anyone got any good strategies?

M1

Welcome to the forum.  I am in a similar situation, with a partner who is resistant to having any help around, inside or out.  But the time is approaching when I'll have to have it--right now, can still leave her alone for short periods, but even then she'll call me umpteen times to see where I am.

I think you'll just have to do it, and let him complain.  You can't let him drive this train any more than you would a toddler--if a toddler objected to your leaving for an appointment, you wouldn't give in, right?  This is the same.  But I know it's easier said than done.  Others have tried telling their LO that the caregiver is a friend who needs a job, or just a friend who's coming to visit (hoping that bonding will occur and the objections will cease).  Others have tried telling them that ADC is a volunteer center that needs his help, he's going to be in charge of so and so.

Don't know if that helps.  Others will chime in.  Good luck, and again welcome....

LovingAwareness

Hi LunaCat, when my Dad used to complain about going to daycare (or when he occasionally still does), I would play on his sense of politeness and thrift. I'd say he was signed up for it today, and they were expecting him, and he didn't want to disappoint them by being a no-show, did he? And then I'd tell he we had pre-paid for the "club" through the end of the month, so it didn't make financial sense to stop immediately but we would talk about it closer to the end of the month and see if we wanted to make any changes. 

Does he have a favorite staff person or participant friend at daycare? My Dad has a favorite staff member and we use that to say that Judy is looking forward to seeing him, and doesn't he want to see Judy today? 

Does he have a favorite activity he does there? My Dad complains that "the club" is boring, but in the beginning he liked the tai chi class they did once a week, and he liked the art projects and even though he is too far along to participate in those much now, he still likes the bowling and various active games. So we play those up and say they are planning bowling today and you're good at that and we thought you really enjoyed that last time. If he has had "successes" there with activities or forming relationships, we try to remind him of those successes.

If all else fails, I have also had difficult mornings where I just tell him I want him to go because I believe the games and socialization are good for him. We are lucky he is cooperative, but sometimes that direct plea still works.

Good luck - you really need that time for yourself and to get things done, so he needs to go.