How has caregiving changed your life in terms of perceptions, plans, daily tasks, etc?


I was thinking the other day how much my outlook has changed since taking care of my father.

I'm not comfortable watching movies such as Titanic because one of my reactions is how anyone who needs a wheelchair or walker could get off a sinking ship.

I take my cell phone outside when I mow the lawn in case something should happen and my father needs help.

As winter approaches I add several blankets to the car and double check the cold weather emergency gear in case anything happens to the car and we end up in an accident or stranded w/o any heat.

Anyone else find that their lives and outlooks have changed in similar ways? How have you addressed, or tried to address, these different perceptions of what often are everyday risks?

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How has my life changed? I don't really have a life anymore. Haven't been out to dinner or to a movie in two yrs. Last time we were out to dinner he caused such a fuss about the bad food. And a movie? He just talks thru the whole thing, loudly of course. Asking questions about what just happened etc.
I too am exhausted all the time. No such thing as a good nights sleep. I wake up every hour wondering if he is going to wake me up. He sleeps in the bed, I get the couch. We get up when he gets up. Every thing is about him. And I am just the chief cook and bottle washer. The laundry never ends, the dishes never end. I also lost my last job because I was taking too much time off. And yes, going back to work would seem like a vacation. However I can't make enough money to pay someone to do what I do. I envy people who find this rewarding. I felt like that in the beginning. I remember that feeling. When I was caring for the man I loved. Now I don't know this man whose meals I cook, whose laundry, I do and whose diapers I change. And I don't recognize myself anymore. I'm not this person who is short tempered and without sympathy. At least I never used to be.

"How has caregiving changed your life in terms of perceptions, plans, daily tasks, etc?" At first my significant other and I were at my parents beck and call, after my Dad had a heart attack... running Mom to the grocery store every other day... running down to their house whenever Dad fell... running my parents to all the doctor appointments, etc. Good heavens, I never realized how many times my parents had gotten into the car back when Dad was able to drive... must be 2 to 3 times a day. That was their routine. We did it for them thinking Dad would be back on the road driving. We spoiled them big time.

Dad got back to driving but that was short lived, found out Dad was having problems seeing to drive. Thus, we were back to driving my parents. All that driving meant rearranging our work schedules, meant using up vacation days, using up sick days, and using up days without pay. Eventually I got a pink slip from a wonderful long term career because I was taking too much time off work. That was very upsetting to me because I was never let go from a job in all my 40 years of working.

Since my parents refuse to even visit even one of the nice retirement communities we have in the area, I felt trapped.... always being on call.... my significant other and myself couldn't travel together as someone had to be nearby, heck we even stopped eating out or going to the movies... what if Dad, or even Mom falls???

Lost a lot of sleep going over the what ifs, and worrying about the future when my parents can no longer care for themselves. What will I do? What will I do? What if my parent resist to what I think would be best for them? It drove me crazy. I did find work again, my current boss's wife has Alzheimer's so he fully understands the demands, so my work time is very flexible. Who would think going to work would be a *vacation* for my mind.

I finally stopped spoiling my parents this year.... had to stop all this crazy driving because it was making me sick.... now I limit it to doctor appointments and groceries. My parents whine and throw out the guilt.... I remind my parents that if they have moved to Ashby [a retirement community] Mom could go to the grocery store daily as Ashby provides transportation. I constantly bring up Ashby. But I also remind my parents that they made their choice to keep on living in their large home, which is too much work for them since they refuse outside help, thus they need to live with their decision. It's tough love for this shy gal to dish out, I feel so out of character.

I feel like I want to end my life sometimes. I just feel so hopeless. I have been a caregiver on and off for several years and it's been very rewarding. But now, I'm living under the same roof and sometimes I just want to die. I hate it.

Whitney, I agree with you that caregiving can be like having PTSD. It requires a higher level of alert, puts us in "flight or fight" mode, or rather in "what can happen next" mode, and as Captain states, all that brainwork is tiring. I hadn't thought of it that way - who would have thought the brain could cause fatigue?

Captain, I like the idea of better planning, and there is less room for error. I also like the idea of not letting the important things be of concern. I've found I also have less tolerance for people who just want to complain, aren't problem solvers, or are focused on things that don'e really matter in the long run.

I guess caregiving sharpens the focus and the extraneous issues fall by the wayside. I had also noticed after my sisted died that I didn't have much in common with people who hadn't at some time cared for someone who was ill or in a terminal state. Suddenly a lot of my friends just didn't seem that close any more.

Brad, I think caregiving does hone our focus to more important issues. Sleep definitely is one. If you miss a good night's sleep, you're just not prepared for the physical and mental efforts of the next day's responsibilities.

I've found it so much more necessary to get a good night's sleep after every day of taking my father around for appointments as I'm usually physically fatigued by the end of the day.

Honestly, I don't know how people can do this and still go to work every day. They have my admiration.

whitney ,
the brainwork is probably causing the exhaustion . the brain consumes huge amounts of energy , imo , as much as hard physical labor .

Positive or negative, either way caregiving has definitely changed my life, I pay now more attention on important things than before, like having a good night sleep! I’m most of the time exhausted, I found other ways to give my dad a shower since he feels cold easily, and I don’t want to talk about him refusing to take a one, also I'm more careful about spending money.
By the way this site is so helpful!

ive become more concise in my planning and execution of daily tasks . i usually prepare a hit list the evening before so nothing is overlooked when i leave in the am .. caregiving requires a much higher level of performance with less room for error and imo can make better people out of us in the long run ..
i dont get upset anymore and i dont bother wasting words on people who just arent capable of complex thinking to begin with .
not mr last word anymore . im mr last act , bam , im outta here , figure it out on your own time chumps ..
its been life changing for the better ..

I think caregiving can be something like PTSD, a feeling of being on "high alert" all of the time. In addition, it's also like being on call 24/7. It sounds as though you are taking wonderful care of your father, and I admire you for it. I feel much more on edge than I did before caregiving, and there is something about it which causes me fatigue, where I feel just physically exhausted a lot of the time.

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