Here's our routine:
I have hired aides to come 4 days a week between 8am and noon. There are two ladies -- One comes Tuesdays and Wednesdays, the other Friday and Sunday. That adds up to 16 hours per week when I can get a break from full-time caretaking. It's not really a "break" though.
People come to give my husband a bath or shower twice a week: Mondays and Thursdays. His nurse typically shows up on Wednesdays.
There really is very little "me" time. The hired ladies do help get him out of bed and dressed in the mornings, unless (as he did today!) he wakes up before 8am. I fix him coffee with sweetened condensed milk (Vietnamese style!) then I fix breakfast. After that he usually spends time looking at the newspaper. I won't say READING the paper because I don't think he can even read any more, but he can look at it for a long time. Sometimes looks at just one picture in the paper, repeatedly commenting on that one photo. Sometimes I see he has the pages upside down. But as long as he's happy!
I try to get him out of the house every now & then -- go out for breakfast, or go out to browse a large store. It's difficult for him to get in and out of the car but I think it's good for him to get out. The weather doesn't always cooperate, and he's not often "up" to an outing. The other day, for instance, we planned to take him somewhere but he opted for a morning nap instead. Anyway, those morning hours when we have "hired help" are the only times we have to get him out of the house for an hour or so, or I can use that time to go mail packages, visit the bank, buy groceries, or pick up prescriptions. I have to plan ahead. The other day, for instance, I had 6 errands to run in 3 hours. So much for "me" time! Then, when the aides leave, I still have to go through the mail, pay bills, balance the checkbook, sweep, mop, vacuum, dust, take out the trash, send out birthday cards, mend, prep for future meals. There is very little time for yard or gardening. If I want to spend time out in the yard it has to be while the aides are here. Once or twice I've been so sleep-deprived I've actually gone back to bed as soon as one of the aides showed up at 8am, so nice to have someone who can take over care-taking for a short while so I can catch up on sleep!
My husband is pretty weak and helpless. He cannot walk, not even with a walker. He's either in bed, in his wheelchair, or on the toilet, except on those occasions where we're able to get him out of the house. His dementia is pretty bad. For instance, I helped him brush his teeth tonight after supper. But a short time later, after I'd helped him to bed, he started complaining that he needed to brush his teeth! He gets very cranky over stuff like this. It is hard on me because I spend a large part of every day helping to make sure he's clean, fed & comfortable, but still he complains. He doesn't realize the many hours I spend every day preparing his meals, doing his laundry, cleaning house, washing dishes, caring for the cats, paying bills, making phone calls, buying groceries, administering medicine, dealing with his catheter, helping him with toileting, etc. He cannot do much for himself. He can't turn the TV on/off, nor change the channel, nor adjust the volume. I have to do that for him. He can't make phone calls, can't answer the phone when it rings. He wants me right there with him all the time. If I announce I'm going to the kitchen to fix lunch, he doesn't understand that it may take 20 minutes or so. I start to boil the water for noodles, start to chop vegs for a salad, start to preheat a skillet, then I hear him whining in the other room. He's already ready for lunch! I have to set the table. I have to get his pills ready. I have to prepare the food. I have to cut everything on his plate into bite-size pieces. I have to get him a drink, and a straw because he can no longer sip from a cup or glass. I have to hold the glass and have to hold the straw to his lips.
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My husband too was completely bedridden, had a supra pubic catheter, had to eat only soft foods, and had to have his drinks thickened, and had to drink out of a straw. I bought him a thermos that he could drink out of, and handle himself. I also put a security camera in the living room where his hospital bed was, so I could check on him when I was in bed or out having some "me time". Mine only has the one way talk, where I could hear him, but they now make them with 2 way talk, so you can respond to your husband even if you're not home. I found the camera to be very helpful and it gave me peace of mind, even over night as I could check on him from my phone without getting out of my bed.
It wasn't until I was at my breaking point(as it sounds like you are too), that I researched and found a local support group for caregivers, and started attending weekly, that I was finally able to understand that I wasn't alone, and how very important it was to take care of me. So besides attending the support group weekly(which now we are meeting on Zoom because of Covid), I started meeting friends for lunch or supper, went shopping(window and otherwise), went to church, had friends over to sit outside for wine and munchies, just to name a few.
So first, I would recommend getting connected to a local support group(you can google it), then perhaps invest in some security cameras(I used Blink), and then start making yourself a priority. If you don't you could end up being in the 40% of caregivers who die before the ones they're caring for. PLEASE take care of yourself.
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Respite breaks are so important. I was exhausted during my caregiving days and I was told about respite breaks on this forum.
I was excited to know about respite being offered at some facilities.
I did research online and found a wonderful assisted living facility that listed respite care.
I excitedly called only to hear they no longer offered respite care for caregivers to use. It was such a disappointment. Some regulation had changed and it was no longer available.
It is such a wonderful option if available in the caregiver’s area.
Are you wanting to stay in charge of all his care & routines - but adding more in-home help? Or do you want to let go a bit & have some external help - your DH spends a day or two at an appropriate daycare?
I have been suggesting this to my Dad so that Mother has company a day or two & he gets some brain space *me time*. Covid (curse it's rotten soul) has made this impossible so far this year.
Consider carefully your options. Too many caregivers burn out & their own health suffers. My DH says now, don't exhaust yourself if I get ill before you. Just get me the care I need we'll all make the best of it.
But, TheWife, if you are burning out: I'd suggest respite breaks. Probably not this year, times and viruses being what they are, but come spring perhaps - start scheduling in 1 or 2 week stays in a good facility every three months.
I started to write all this to a friend who lives in another city. She always asks how things are going. But then I thought no, why not post it on AgingCare instead. No sense making my friend feel bad when she's living with her own set of problems! And yes, I do plan to schedule respite when this pandemic ends. Right now the almost-isolation may actually be a good thing: I can't blame my husband for my not being able to do a lot of things outside the house! I hope you have a good evening, thank you.
Me time is time that you spend NOT having to even remember or think about your husband and what to do for him.
Me time is the time you spend to relax and recharge.
Me time is the time you spend doing things you like to do with the time you have left on this earth.
You really need to have more help. I hope you find a way to make that happen.
Do you think that recent generations have had it harder?
I do. Earlier generations did not have the medical professionals that we have.
No meds, no advanced treatment of conditions, so they died sooner.
I am glad that you have some help but it truly isn’t a break to get away for just a few hours.
You need an entire week for vacation, right? Or maybe 2 weeks, or a month. Am I right?
Have you considered placing him in a facility? I read your profile and your husband needs a lot of care.
I realize it is a different world with COVID-19.
The question is , how much longer do you think you can continue caring for him and not burn out?
Best wishes to you and your husband.