Every time I had a stressful CG time with DH, I would want to shut down and sleep. And if one of the kids offered to be home with him, that's exactly what I did.
I take a nap almost everyday. With DH WFH he has been aware of this and has commented on it. Since the cancer, this is the new norm. He's never seen me so easily fatigued and I have to care for myself as he certainly does not. Having him at home working has been really bad--he treats the house as his office, I have to be quiet at all times, and he eats all day and leaves messes all over.
Sometimes I go down for a 'nap' at 4 pm and don't get up again. If I sleep like that, it means my body needs it and I am learning to listen to my body and treat myself better.
I'm of zero use to anyone who catches me when I am so tired.
Sleeping and chilling to some jazz without having my mother nag about something she thinks need to be changed in my house, or anything related to the cat which is not an emergency, example: "have you seen the cat? Where is he?" when he's an indoor cat and all our windows and doors are shut... I just want one day where I don't get blamed for the most trivial crap.
Almost 2 years ago, my hubby and I came back to our hometown to help mom care for dad who has dementia .. we moved 500 miles away from here almost 20 years ago. I would go visit old friends... screw COVID!
I’d also say sleep...but since I don’t rest well anyway and miss the outdoor life, I would love a 4 day vacation at a little house or tiny house by a lake, near a forest with a view of the mountains. Yes only 4 days because while I don’t like the current living situation I’m in, I miss having my own things about me and my own bed and just going into my closet and picking out whatever to wear. Living out of a suitcase with travel size things and limited clothes etc isn’t fun for me. No I’m not fancy, I just feel better when I have options.
I wouldn’t care if it rained every day so long as I could have fresh forest smell in my nose and the cacophony of bird song. No city noises, no neighbors running their leaf blowers at all hours, no Harleys revving up at 5am. Just Nature in its pure state. I’d eat pb&js and apples and swat at gnats and mosquitos and never stop grinning through my tears of happiness. If my bf and my dog came too, it’d be fine but even 4 days without them both would just allow me to breathe freely with no care but myself. Then my anxiety would kick in and I’d realize “IM ALL ALONE OUT HERE AND WHAT IF...?!!” because of course it would. Lol. I do so love my very special brain.
I would love to spend a whole day working on my garden and yard, and hanging out with my dogs. Sleep well and all night, and not wake up to the sound of a motion alarm. Take a long shower and not worry abt what is happening while I'm there. Go out on a date.
I'd. been with "my lady" 10 days straight, no breaks. Alzheimer's client, plus sundowners. I'd recently bought my dream car, a red ragtop mustang. So on my next day off, after clearing it with the kids, early morning, I picked my lady up, got her strapped in her seat, and we had a trip of a lifetime! Sunny day, warm, so we put the top down, tied her scarf on, headed for the mountains. She picked the music, which way to go, and we rode all day, seeing beautiful country. What I saw was a senior full of happy laughter, content with her day. We stopped at the gift shops - bought nothing but lunch. As the day wore down, we headed home. I could see she was getting very tired, so we put the top up, and she sat there and dozed off. Got her home, into her p.j.'s and for the first time in my two years of having her, there were no arguments about going to bed. This was in July, and in August, my lady went home. In her sleep. When cleaning the home out, her children found a note she had written to me, thanking me for the most wonderful day in her almost 80 years. She had also left me the scarf she wore that day. I was blessed to know her.
Go to the Ocean, I would say a long cruise but that is shut down for now. Visit my out of state children and grandchildren. Sleep in, Go to some care shows with my 68 firebird. Downsize my house. Oh to dream!
Reading these comments, I had to smile in recognition. For the people who'd want to go to the beach/ocean, my mom with Alzheimer's once had the delusion that she had rescued kids from the ocean. She envisioned herself still being wet. Here's my Dr. Seuss-type rhyme for what I'd do if I had a day off, when we were taking care of her: I'd take a carefree shower, not worrying if she'd run out the door, I'd cook a leisurely meal, and so much more: I'd answer emails in a relaxed fashion, I'd read a book about (com)passion. I wouldn't try to reason with the Alzheimer's brain, I'd try to remain centered and sane. The stress and strain, I won't miss; when there's a cure, we'll all be able to do this. As an aside, (no rhyme here), I even wrote a book about taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."
Once upon a time a number of years ago, my elder parents with whom I live were going to FL to visit the golden child sibling. I took them to the airport where I sit here remembering with a smile my mother telling the check in counter agent that I wanted "to get rid of them". This while I was doing a pre-TSA check of my mother's carry on bag only to be shocked in finding bottles of medications after some time previously I had gone through the cupboards to take all no longer used meds away. I was given a gate pass to accompany them. Mom had not yet been officially diagnosed with dementia, but clearly wasn't the person she used to be and I (correctly) guessed that this would be their last trip, which saddened me on so many levels as I knew my dad was like a kid and enjoyed just being at the airport and taking a flight. I had arranged vacation time for myself to be home and enjoy the peace and quiet. Fool that I was, I spent it cleaning without interference. Yeah, I was glad I did it, but so sorry I spent that precious time not just enjoying it...or sleeping in peace. Though I must say at that point mom was not up in the wee hours. If I could twitch myself elsewhere, if it was a tad warmer and sunnier I would be in my hotel garden up in Toronto with my pup beside me letting the waterfall drown out the rest of my life at this moment. I am burned out as well, last fall to the point of it seriously impacting my health to being near death. Now I feel a little angry that my retirement will have to most likely be on schedule, earlier than I anticipated so my income will be impacted going forward. It often seems every time I am visible, I am "assaulted" for lack of a better word by my father who does NOT have dementia to do SOMEthing. Today it was he thinks he needs to see the MD. Not for anything in particular and his issues have been tended to by the specialists...he has an appt with the cardiac guy re his pacemaker next week, and has been seen by the dermatology dept for his skin issues. This AM he announced that he had gone to an urgent care yesterday only to be sent to the ER (more money for the clinic system). He had a skin "tear". Not the end of the world. I don't have any answers for you, sadly, but know the sounds of burn out, and encourage you to see what is available for respite, if only for a few hours a week you can count on as your own, and even if you stay home and take a nap. Bless us all.
Yes! We are on the road this Mother's Day, returning from a glorious week away. I called my mother and wished her Happy Mother's Day and will take her out tomorrow for lunch. It will be less crowded and I will be a happier person. My church caregivers' support group gave this shocking statistic: Forty percent of caregivers GIVE OUT before the person they're taking care of. Happy Mother's Day all.
Sleep, read, watch a show, work on a puzzle... Just about anything as long as I’m uninterrupted. Right now my mother (lives next door) is upset because I had her PSW work her usual morning shift, instead of doing it myself. After all, it’s Mother’s Day. My daughters waited while I slept in and lounged in bed reading, then made me brunch. So now my mother is in my house asking what kind of feast I have planned for her dinner. Mother’s Day has always been a challenge because I prefer quiet downtime (which my fellow introverted kids understand) and my mother wants me to socialize and put on a spread. For context: She is at my house every day, neighbours for 18 years.
I love to spend time alone in our Heavenly Poppas Cathedral. It is called nature. To just sit there and drink in the beauty while listening to natures symphony. All the while enjoying feeling His presence. There is nothing to compare to it.
Be with nature In a forrest Surrounded by Redwoods A walk in Muir Woods (Mill Valley, CA) at 7:30am or 6pm Walk down Alice Eastwood Road (goes into Muir Woods) Be on an AmTrak train, in my own sleeper "roomette" on the way to . . . Reno in the winter, going to Chicago (to then go to Anderson Japanese Gardens . . . which I am doing in October). If a day . . . do my exercising, stretch, slow jogging, obverse the beauty of the patterns creates by branches of a tree Watch anything about octapus (highly intelligent) Going fast / being on the back of a [loud] motorcycle holding on close and tight [I just need the driver] View beautiful wild birds - anywhere Going out to dinner and engage in stimulating conversation Smoke a puff - well, no never mind Soak in a hot tub with the 'old gang' Purchase a winning lottery ticket, hire a financial adviser/attorney, call Fisher... then design my own tiny houses to (1) live in two, adjoining, and (2) to sell Create a grateful list to balance out the time(s) I'm fried or beyond exhausted.
Hire a caregiver so you can do whatever you want once a week or as regularly as possible. It is essential to avoid burnout so you can keep going. Sleep doesn't count. . . If you need more sleep, you nd more care/giver support on a regular basis. With not enough sleep, you will not function as you NEED for you and your loved one.
Just about anything is enjoyable knowing I can give it my full attention. But I would love to go to a Giant's baseball game now that things are opening up.
I hope you are able to get sleep soon 💤.
Take care.
I take a nap almost everyday. With DH WFH he has been aware of this and has commented on it. Since the cancer, this is the new norm. He's never seen me so easily fatigued and I have to care for myself as he certainly does not. Having him at home working has been really bad--he treats the house as his office, I have to be quiet at all times, and he eats all day and leaves messes all over.
Sometimes I go down for a 'nap' at 4 pm and don't get up again. If I sleep like that, it means my body needs it and I am learning to listen to my body and treat myself better.
I'm of zero use to anyone who catches me when I am so tired.
I like your taste in music! I love jazz. I listened to it on the way home from visiting mom in hospice.
I never listen to the top 40 crap! Growing up in New Orleans has spoiled me with good music. I don’t go for mediocre pop music.
You can stream our music online if you like jazz. wwoz.org That is our Jazz and Heritage station. They broadcast our jazz festival.
I am so looking forward to the festival opening up again.
I wouldn’t care if it rained every day so long as I could have fresh forest smell in my nose and the cacophony of bird song. No city noises, no neighbors running their leaf blowers at all hours, no Harleys revving up at 5am. Just Nature in its pure state. I’d eat pb&js and apples and swat at gnats and mosquitos and never stop grinning through my tears of happiness. If my bf and my dog came too, it’d be fine but even 4 days without them both would just allow me to breathe freely with no care but myself.
Then my anxiety would kick in and I’d realize “IM ALL ALONE OUT HERE AND WHAT IF...?!!” because of course it would. Lol. I do so love my very special brain.
Note to bigsis below. For Parkinson's caregivers the statistic is 62%.
In a forrest
Surrounded by Redwoods
A walk in Muir Woods (Mill Valley, CA) at 7:30am or 6pm
Walk down Alice Eastwood Road (goes into Muir Woods)
Be on an AmTrak train, in my own sleeper "roomette" on the way to . . . Reno in the winter, going to Chicago (to then go to Anderson Japanese Gardens . . . which I am doing in October).
If a day . . . do my exercising, stretch, slow jogging, obverse the beauty of the patterns creates by branches of a tree
Watch anything about octapus (highly intelligent)
Going fast / being on the back of a [loud] motorcycle holding on close and tight [I just need the driver]
View beautiful wild birds - anywhere
Going out to dinner and engage in stimulating conversation
Smoke a puff - well, no never mind
Soak in a hot tub with the 'old gang'
Purchase a winning lottery ticket, hire a financial adviser/attorney, call Fisher... then design my own tiny houses to (1) live in two, adjoining, and (2) to sell
Create a grateful list to balance out the time(s) I'm fried or beyond exhausted.
Hire a caregiver so you can do whatever you want once a week or as regularly as possible. It is essential to avoid burnout so you can keep going.
Sleep doesn't count. . . If you need more sleep, you nd more care/giver support on a regular basis. With not enough sleep, you will not function as you NEED for you and your loved one.