Lately I have been feeling really tired. Last night I went through last year's calendar, and this is what I found:
30 doctor's appointments 13 physical therapy sessions 3 CT scans 1 surgery 2 visits for labs (separate from labs during doctor's appointments) 5 home visits by our case manager 2 trips to a nearby city for a medical study 9 home visits for home care equipment and medical equipment and supplies 2 visits to the lawyer Interview with home care agency Trip to the mortuary to make funeral arrangements Medicaid recertification
This is in addition to countless trips to the pharmacy (DH got 12 prescriptions at his last doctor's appointment), monthly orders for medical supplies, all the planning and phone calls to set up all of the above items, going through several really bad home care aides before finding our present jewel of an aide, and doing all the million other things that caregivers do just to keep the household running.
I think the next time somebody asks me why I don't get out more, or why I'm not instantly available for phone calls or visits, I'm going to print out this list and hand it to them. Then I'm going to go back to bed.
Hooray for you! I think people think we just sit at home and "watch" our spouses so they don't do anything stupid. Maybe we all need to make a list of what we do daily and make copies for people who don't get it. Just the mental strain is enough to make you want to go back to bed for a month!
I did not realize how much I did until my sister was here, and I watched her do 75% of it. As I sat back and watched, I saw with my own eyes why I am so tired. No one who doesn't either do it or see it first hand will ever understand.
Once, one of my SILs actually told me I was unreasonable to demand she remove the Power chair that had been brought to DH, against my expressed instructions that he couldn't have it. (Major safety issues) This was 2 days after when she'd said she'd be here to get it. I wasn 't taking into account that she was working overtime and didn't have any in-home help like I did to let her be a lady of leisure.
What a great idea..going through last year's and even the first months of this year's schedule of care issues for our LO...and then when someone asks how are we ( which they seldom do) or just to let those all too far away kids know what your life is like when they start to go on and on about all the trips to the beach, travel to wonderful places, parties..you know the drill...just send them a letter or a note and start out with ..my life too has been so busy I just made out a list and photocopied it to save the cramps from forming in my hand whilst I write out all of my exciting, stimulating, activities. Glad we are both doing so well.. snicker snicker
How many of us still work outside the home. I have a part time job, 4 hours a day, 6 days a week. Along with 15 yr old DD still at home. My life is full to the top.
I am still lucky, DH is still able to do so much for himself. That does help. But like today I need to pick my car up from the repair shop and have to get my mom to take me. So many things to work out.
DD has a dr's appt tomorrow and need to get to the store. I keep thinking next week will be better, but we all know it won't be.
Don't get me wrong, all in all I am still very blessed, but like us all we could use some help.
DD went to the doctor's yesterday. She is now on 4 meds, that brings the total for the family to 14 meds, OTC and vit. Taken 9 times during the day. And I am in charge of making sure everyone gets what they need when they need. Along with the dogs who get their heartworm pill on the 1st. And we wonder why we are tired.
Even now with dh having entered a facility, I m exhaustred! Especially now... halh hour there. ..half hour back. Bad roads. Visit for an hour and a half at least. Then try to have a life too. He's in a va facility and so far I'm very pleased with the care but don't think for a second that you'll have time or energy if he's placed.
I agree Chris! I am more tired and flat out exhausted now than I ever was when he was home with me. There are no lazy pajama days now.... my whole life is now focused on my daily visits to the nursing home and advocating for Lynn's care.
Nikki--I know this is easy to say and hard to do--but can't you take at least one day off a week and have a lazy pajama day? I have to do that to maintain(?) my sanity!
Marilyn, I now try to take Sundays "off". family is so important to me, so now we try to do something special on Sundays. I missed out on so many family get togethers in the past, I am determined not to miss any more! Having said that, I am just horrible!! I call the nursing home several times a day when I am not there. Logically I KNOW he is getting the best care possible and is fine.... but emotionally, accccck.... lets just say I know I have a lot of work to do in this area LOL
I know it is hard not to call. My hb is now in a care facility for a medication adjustment and I have forced myself not to go there every day. I just tell myself that if there was a crisis I am sure they would call me.
I complained to my therapist about never getting anything done, partly because I am constantly behind on paperwork related to my husband's and sister's illnesses, our bills, etc. She told me to quit making to-do lists and then noticing what I didn't do. Instead I'm supposed to make lists of what I DO do. I tied it for a couple of weeks. She made her point. You would be amazed to find out all you do every day. Give that to those who ask.
Carol, someone needs to find the slap fest thread for that SIL. "Lady of Lesiure" indeed. No one could ever say that about you.
No wonder I am always tired----all those things you all said I too do.My husband can still do some for himself but I have to oversee it all.Even going to the bathroom takes TIME .And you have to remind him to drink more and put feet up so legs don't swell etc.And the paper work never ends. We all need a nice long vacation!!!
So glad I looked at this discussion. I feel physically exhausted every day. Thank goodness I am no longer working. Don't know how others do it. When people ask me what I do all day, I don't really have anything to say - take care of my house and husband. In between doing for him, I do what needs to be done around the house. I don't have the help to go/come when I please and luckily have someone come over one day a week to watch dh so I can get to the market. I tried a couple of help companies but was very dissatisfied with them. Sometimes I feel bored like Emily explained and wonder how that can be but those are the so called "free times" in between care. Too tired to read and if I begin a project, it is generally interrupted so gave up on that idea. Haven't really baked or had a big meal for a very long time. My dh can't really help anymore and am lucky he can at least try to eat a little by himself but now I have to watch to make sure he doesn't fall asleep in his food. I think since getting the lift, I am even more exhausted. My muscles are very sore. When I go to sleep at night, I am so very tired and yet don't wake up rested. The other day I realized that I am dreaming about what is going on and so am still "working" in my sleep. Anyone find how to get some energy back? Coffee helps me in the am as I get up 1 1/2 to 2 hrs before dh (around 5 or 5:30 am). That's my time to wake up and get myself together. After that the energy level goes downhill. Pushing the wheelchair on our daily walks is also very exhausting - dh used to be able to walk behind it or move his legs while sitting but no longer. I guess we just have to remember to live one day at a time or it becomes overwhelming. bak, I can't remember my last vacation. I think it was 10 yrs. ago. I have been doing this for so long, I don't know what I would do if I actually had some free time to myself.
Oh, Brindle, you do sound tired. Have you tried taking a bath/shower at bedtime? I find it helps me to relax and sleep soundly. Just an idea. No help for the main haul: you need more respite, not just to go to the market.