How do you not let caregiving completely destroy everything?
My day starts with my father's suite smelling awful. Old man smell. Every day we clean it, I light candles, but by the end of the day, it just smells old and sick. I go to my own bed wanting to scald off my skin so I can't smell it. This weekend, I was gearing up for today - the ONE day where I could do work - complicated work, that involved multiple locations and video shoots. I told everyone - I MUST GO TO WORK ON MONDAY. MUST. DO. MY. WORK. This morning, the aide comes and she's new, so once again, I have to explain the big dog, the keurig coffee maker, location of silverware, on and on and on. Then dad starts to complain that he is in terrific pain - he has JUST gotten out of rehab last thursday - way too soon in my opinion, with a fractures (no surgery needed) hip. He wants to go to the hospital - unusual for the pain. Thus, while I'm trying to get ready for work, I have an ambulance coming, the aide is upset because her patient isn't around for our four hours, and dad is barking at everyone. In the midst of all of this, EMTs are looking for his current list of meds and asking me questions, while I attempt to put on mascara.
Finally, because the DH, probably sensing I'm going to stroke out, tells me to go to work and he'll handle. I DO. This is first time I have NOT gone to the hospital with my dad. Because could we be honest - for all that cheery "family first" rhetoric, no one gives a damn about my dad. They want their work done.
I have been an editor and an executive consultant forever. My work has been my greatest pride, other than my wonderful children. I am literally watching my career - essentially my life - be shredded before my eyes as I handle my father's care, month after month, year after year.
Naively, I thought everything could be solved with a hospital bed and day aides. I really thought this would help - and it did, sort of - except there were still other endless tasks at night - now changing diapers, helping him use the toilet, picking up everything that falls off the bed, endless endless searching for the remotes he's lost...I am NOT relieved of my run-and-fetch role with my dad, and often, he'll call out for something at 1 or 2 a.m.
But that run-and-fetch gig is fracturing my concentration to hell, and it's killing one of the sweetest, most flexible contracts I could ever get. I feel murderous - not toward Dad - I feel so BAD that he's having to deal with this, but toward fate and God. I want to rant and cry, but I'm taking Xanax instead, just so I don't stroke out. I pray for this to end - and then I feel guilty, because i don't want dad to die, I just want him to feel and be better. But as we all know, you get into that spiral, and I don't think there's any cure. Sigh. And the old man smell. Every day, the old man smell.
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Elder care can take a lot out of us. We try to hold it together and do the things that need to get done, but after a while we become split. It is hard to live life for two people. One part of us wants to be a good caregiver, but the other part just wants our life back. There is a thread running now about this on this site. It is the one started by me and the Incredible Hulk. You might be able to relate to some of the messages there.
I have the "luxury" of working from home and on my own schedule. Working for someone else or on a contract would be a challenge, especially because emergencies seem to arise when we plan to be away. Was anything wrong with your father that day or do you think it was anxiety about your being unavailable? I'm glad your DH helped out, especially because the caregiver was new.
I feel your stress. It seems that we're caught in a waiting game. We want our lives back, but feel guilty about wanting it. I imagine that many of us become very traumatized if it goes on for too long.
Very well said! It's a horrible Catch-22. I'm finding it difficult to be happy around Dad, or happy in general. I want to be upbeat with him, but his dementia is driving me crazy!!!
For the new person that comes in: I have helped create a binder on a "how to run my house without me" - complete with pictures and detail that even a trained monkey can do it without asking me a question. From those that have used it; it helps.
For the medication list: we have one laminated on the refrigerator: complete with when and how many pills and a list of doctors for each one.
For the run and fetch; I use technology (Amazon, NetGrocer) to not spend my time at the grocery store for things, and a local 24 hr store. For the losing of the remotes ( :-)
We have purchased "extra" kept in the box with batteries in the closet for those (I have no time for this; use this and someday next year the original one will show up).
Also, I'd check in for respite care in your local area that can give your Dad more assistance on the day you aren't there to assist.
And for the contract you need to protect, I would seriously consider a second phone for work: The only people that have access to it is people that need it and for the one aide that will call you only if they were being flayed alive- and possibly not even then.
If you do, on Monday, you will have to do the unthinkable. Shut off your personal phone and leave your work one on. You know who is likely to call you on your schedule, so it might not be as horrific as it sounds, but it may be time to shut off your personal phone on Monday and only grant access to that new work line for an aide if necessary.
I rarely suggest getting another line, but rather than feeling murderous over a situation that can't really be controlled, "controlling the chaos" is the only option you can consider. And investing in a lot of Plug In Glade in every outlet in the house that give me a happy mood (especially in my family's old man hospital smell in that one room) has helped my mood tremendously and worth the small fortune I paid for my sanity.
I hope your mood improves; not just toward fate and God, but you need a different way of coping for something that isn't in your control. Xanax helps, definitely, but grieving against the inevitable change old age does to a family: grieving the loss of strength, of what they were and building a consistent, and unbreakable work ethic of what we know now: they are getting old, and given the symptoms he's having, it's not going to get better, and one day, you won't be tasked with it.
I'm taking care of both of my parents: the hardest part is realizing and adjusting your freedom of movement to the ailing part of your parents' life. If given the choice; I choose my parents, but as much as I want their health back, there's no going back, and the minute I have my full freedom again...it will also mean I have lost both of my parents.
The minute you find your equilibrium to that, the less angry you will be, and it will be easier to find the endless losing of stuff - believe me, the umpteenth time of losing stuff, picking stuff up, and caring for stuff taxes the best of strength reserves - so it couldn't hurt to see if there is more care giving resources in your area.
People prefer not to talk about the horrors of caregivng that involved personal care. But it is a war zone.
It will end. And you will guilty and are feeling guilty. For you to move on, your father has to die. It is a terrible choice. To get happiness back in your life, your father has to die and you love him so much that you can't let go. I wrestled with the same thing. When my mother did die, I was so exhausted, I could not cry. It took me over 3 months to finally shed tears. This after shedding tears every day for the last 5 years of her life which were horrific. I was all cried out.
I'm a tired only child too. And I share your sense of smell.
I walked in the house one day and old urine slapped me across the face-HARD. I'm a nurse. I know how to clean a patient. I had been cleaning my mother with soap and water after each bathroom use. I also sanitized the whole bathroom with bleach and Lysol and cleaned the tile floor in her room frequently. The diapers/pads were changed with even a tiny amount of tinkle. WHY did my house smell like an old folks home?
No matter how many times I washed my mom, she seemed to "exude" an old lady crotch smell. (Sorry for the weak of stomach.) Darn, nothing would kill it. She didn't have an infection and she had just completed a course of antibiotics.
That was ONE of the many reasons we had to put her into a facility. We couldn't (no, I WOULDN'T) have company in the house smelling like that.
We had my mom living with us (94 yo, stage 6 Alz.) for 3 months. It felt like 3 years! All life, as we knew it, went out the window. It was like taking care of a 130 lb. newborn and worse. I thought we'd get evicted with her screaming at the top of her lungs.
Really, there is no way to incorporate your life, and all it entails, with full time-live in caregiving. It's one OR the other. You will be driven mad if you try to do both and may go mad even doing "just" the caregiving. I understand (but don't agree with) physical elder abuse. You are pushed to the brink of insanity and actions come before reasoning.
No one should be doing this job. As much as we love them (or in some cases..not), they belong in a facility where they have 3 shifts of c/g's. Yes, they get bedsores and probably aren't changed as often as they would be at home, but the physical and emotional toll it takes on the family member c/g is huge. You might as well give up any thought of a life you had planned if you're going to do this at home.
Never truer words said. I used to be a VP of Marketing and Media. Then I stepped back and became a consultant for the flexibility of doing most of my work from home. Today - I could barely - barely - make it as a consultant, the sweetest arrangement I could have dealing with my dad. To take the chance of losing this too because of the endless caregiving demands caused me to burst into tears - and I NEVER cry about anything. As a matter of fact, that's not a positive trait for me. I don't know how this morning managed to roll so badly -- I think dad had trouble sleeping because of the bed sore tearing open and it just got worse and worse - or his fractured hip decided to give him more pain than normal. And he KNOWS that I'm the breadwinner, etc. etc. ..but when it really comes down to it - like so many people have said, sick people are like drowning people, they literally will push you under the water to try and survive. That's how I feel. Now I'm going to go check out your Hulk thread.
I have no real answer but am right there with you.
I too was a mmvp, now a consultant in order to caregive. The past year, every time when interviewing a new client, my father has a crisis and has had the operator cut in, or the doctor, or someone at the va. Of course the potential clients are understanding and will get back at a better time...So no clients for this year.
Just found this quote from humorist Sandra Tsing Loh, “My father is taking everything! He is taking all the money. He’s taken years of my life (sitting in doctors’ offices, in pharmacies, in waiting rooms). With his horrid, selfish, grotesque behavior, he’s chewed through every shred of my sentimental affection for him…He’s destroyed my belief in “family” as a thing that buoys one up. Quite the opposite: family is like the piano around Holly Hunter’s ankle, dragging me implacably down.”
Completely, my sentiments.
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