How do you not let caregiving completely destroy everything?

::Hugs::   I'm so sorry it was a rough day for you!!!  

Re: old man smell - yep, I completely understand! I was just thinking about that today. I can't handle the smell. I was at the store this morning, buying anything that smelled good, to put around the house. Yes, it smells artificial, but it's better than the alternative. ::sigh::

Also, please don't feel guilty for how you feel, and for your anger and frustration. It's a tough road! We've been essentially caring for my FIL for 9 years now, although not always in our home. My husband was a film and video producer, and that has pretty much gone away because he took so much time off from work in the beginning of Dad's illness. He's not doing anything creative now, and it kills him! If you can possibly salvage your career and stick with it, please do!!  Assuming you're in a similar business, then you and I both know that this is not an industry where you can let relationships and contracts lapse, or they might not come back. I think my husband sometimes regrets how he handled his career, and so do I.   :(   I feel bad for him.

Can your father possibly go anywhere else, or live with another family member for awhile? It DOES consume your life, and at some point, you need to live your own.

whirledtravel - I'm an only child. So I'm it. My dad has lived with us for almost five years, after my mom died of breast cancer in early 2013. I used to worship my dad, but I've been seeing way too much of him - private parts, cleaning bed wounds. the list goes on and on. Things until this year have been fairly manageable. Now I'm out of my league. I don't know whether we should hire day aids for more time, hire a nurse to help out with serious issues - I have never been stumped on how to plan for a problem (that's what I'm paid the consultant bucks to do) but this is not working out the way I keep planning. LIke I said, hospital bed and aids? No plan for the new bedsore that he's arrived home with from the rehab center where he was supposed to be getting better. And on the networking, thank GOD for fb or linkedin or my networking would be shot. Everyone is tired - the teens are tired of papaw (which makes me SO sad) I'm tired, the hubby's tired...even dad is tired. But it seems like home care, versus 8K private pay nursing facility is a no brainer - especially since his conditions are kidney and heart failure, not dementia. That said, right as the EMTs arrived - on the DAY I HAD TO BE AT WORK - everything that happened was a classic example of the wheels coming right off the wagon. What has made me SO happy as a caregiver - Dad at 11:32 has been admitted to the hospital - that means I get ONE night with sleep.

I know what you mean about the smell. Every day I am hit with it when I come out of my room. There is really no way to get rid of the smell. It is a natural thing caused by a chemical in elder skin. I try to ignore it, but I have to admit I get embarrassed when people visit. They probably think the house is filthy because they don't understand the smell.

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.

Quote: "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."

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!!!

@ tired - I'm sorry that you don't have any other family that can help. We've found respite caregivers, and have managed to keep the same 4 people on a rotating basis, which helps. But yes, it's expensive, so we don't have them here that often. I wish I had a better answer for you.

JessieBelle "It seems that we're caught in a waiting game. We want our lives back, but feel guilty about wanting it."

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.

Tired, :: big hugs ::
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.

No cure for you, but a few suggestions. Candles and such won't cut it! An electric air purifier does help. Not only do they clean stuff from the air many remove odors. Good old baking soda (by the case) can help too. Mental scanty, is a bit trickier. If you can afford it book yourself a weekend a month at a local hotel. Pack your favorite snack foods and beverage. It may not sound like much, but it can do wonders! What I use to call a quick recharge.

Gawd...that's horrible! Caregiving takes a lot of people; though I haven't resorted to drugs yet, I have resorted to doing this for others going through the same thing:

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.

Hey! Since your dad is in the hospital right now (I think), could he go to rehab for a week or two (I think Medicare pays.... check first), and then maybe into a facility near you? You could talk to a social worker at the hospital; they often place people right out of the hospital - that is IF he would be willing, and all of your are willing (sounds as if you are). I don't know his financial situation; is Medicaid a possibility? I got this from others on this site and think it's valuable, maybe for you, too.

only001 and SLMily - thank you so much. It does help to hear about others' experiences - and SLMily, love the practical binder. Professionally, right now, I'm two days late on sending the last two deliverables on a major project. It's not a big deal - but it feels like a big deal - because I keep hyperventilating that they're not going to use me again (new youngsters) because it's late. (I've had the contract for about eight years) Then I have to draw back and say, so what. Really, so WHAT. What I do is very complex - translating molecular cancer research into layman language - so good luck to them to find someone else who knows the doctors, and can write it...But you know, I also know everyone is dispensable. So, today, Dad was discharged after receiving dialysis in the hospital - could barely walk, no pain meds for hip, no meds/creams for the bedsore. No work done again today as I waited for hours for them to get him ready. The only good part is I did have a meaningful conversation with his doctor tonight, and we have a new "plan" in place - again. Lots of home health aids. Home health care gearing up with nurses, PT and OT. Palliative brought on board. Wheelchair transport for dialysis. And a heart to heart with doctor AND dad about the fact we are hitting final stages of life. Not far enough along for hospice (which means almost instant death sentence because all dialysis ends at the moment you sign up - with kidney failure being the ruling condition). But yes, we're talking weeks or months, not years. Dad is absorbing. I'm absorbing. I have psychologist I've know for years coming to the house to talk to him - which is as close as we're going to get to a priest-like presence. Thought I might feel better with something in place, but then after long, bad news chat with doctor, and then listening to dad talk and talk and talk and talk - because it's HIS LIFE - I still couldn't turn off the voice screaming in my head, no work done today; kids got no attention; dogs need fed; all the damn dishes in the sink; I want to run away, run away, run away. No winning. Even when I DO all the right things, my head is so not where it should be. Exhaustion, followed by rage, followed by guilt. So glad I took the Xanax last night - the best thing about today is that I slept this morning like the dead.

tiredonlychild,
I am here with you and send big hugs from Ohio. I worked as a private chefs or dinner parties which often required minor prep at home from chopping onions to loading platters into the car. Whenever I had an event, I would tell mom and hubby that I have to be in my zone so I don’t forget anything, rush, or feel scrambled by the time I get to my clients home.

It seemed like every time I had a dinner party to prep for, mom had a “crisis” that just couldn’t wait. It got to a point where I had to stop taking on parties altogether and work from home (no creativity there) and its killing me. I am working on finding ways to get a creative outlet again, it is healthy for me mentally that way.

For the smells, I order candles online from a locally owned company Scented Sugars in Ohio. The throw is very strong and will cover anything. I also have made some DIY sprays with witch hazel, spring water, eucalyptus essential oils (kills bacteria) or other oils that smell good to you. They are cheaper to make big bottles to have on hand vs. store bought. I spray them every time I change her sheets on the matteress, floor, furniture, and everywhere.
For my moms bedside commode, I fill it with 50/50 listerine and water. It is better than pinesol/Lysol or bleach.
If the smell in dads room is unbearable, I suggest swiping a small amount of Vick’s under your nose or lavender essential oil. I don’t want to offend my mom or make her feel awkward about me cleaning up behind her by wearing the masks I used to wear, so the Vick’s really helps me.

Also, look for things in dads room that may trap or hold odors. For me, I realized a lot of moms body oils and lotions start off smelling good but once they mixed in with her body chemistry, it started leaving a stale old grease scent with was not pleasant and mixed in with other odors, became unbearable.

It was more hassle coordinating aids than the value I felt they brought so I cancelled the aids. Not to mention, mom was telling them they didn’t need to do anything bc me and hubby would take care of it, and they listened to her while I was or running errands and would literally just sit there, relax, and chat with her :)

I have been exactly where you are..at least you have a husband who is helping you! It is too much. MY mother, had bowel incontinence, and it was terrible. At the time I would try to get to bed, show would call for me to put her on bedside commode. It was despite being placed on a bowel program, etc. I would be so tried from the whole day's activities, that I just wanted to go to bed, and i could not.

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.

Momshelper - thanks so much for the practical advice - and the preparing meals - watching something you LOVE as a career be destroyed - not by anything you've done, but by circumstance, is a hard pill to swallow. Today has been spent doing nothing but coordinating home health care and having difficult conversations with dad - at dialysis - about the palliative versus hospice options. This is the first day he said he wanted to die. I had to tell him that pain management is not the same as death and dying issues. That we HAVE to get the pain under control before he can throw in the towel - then if he wants to do that, at least he's doing it with a clear head. I tried to tell him that when I had MRSA - with a brand new baby - (got infection in hospital) and two other children - I STILL wanted to die because I hurt so badly from the MRSA. And of course, I didn't want to die - I fought like a tiger - but that's what pain does to you. Aides - Kind of worthless. Headed out now on my neighborhood listserv to find a private person - not through agency. Is that better?

Hi tiredonlychild,
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.

I had to put Mom in long term care because by the time I got home from a 12 hour shift at the hospital ( I’m a RN) , I was to exhausted to feed her and get her to bed ...I have severe Psoratic arthritis and my joint pain and immune system is very weak ...I’m on chemo and and iv biologic for it ,,..I am a clinical supervisor so I run the unit and I was so tired by the time I got up for work and to exhausted to help her to bed after her caregiver left ,,I could barely take care of the poor lady ..and I worried if I suddenly had a car accident or a critical illness she would be alone in the world ,and no one to take care of her ,,so I placed her ,,and I’m lonely and sad with out her ,,,but that’s the only way I could cope ,,,please know you are in my thoughts and prayers and hope all gets better for you ..this is the best place to come I couldn’t of made it this far

I was lucky because I could take Mom to work,with me to the same hospital I work at ..I would call 911and have them delivered to my ED at my hospital and I could work and they would call me for any changes in her condition

Nothing much to add but reading and empathizing. Also a tired only child. And this:

**watching something you LOVE as a career be destroyed - not by anything you've done, but by circumstance, is a hard pill to swallow.**

I really need to get a job, but I have no idea how on earth I would manage it - my mother has SIX sisters still living all in their 80s. Two of them didn't have kids, one has only one child who has a partner with cancer, etc. Every time I even try to plan a weekend out of town someone gets sick and I am, um, strongly encouraged to step in. Doesn't help that nobody much has saved any money. May be having a convo with Mom about Medicaid soon.

Anyone know if there's a thread with suggestions for employment for those of us who have a hard time working for someone else? I'm getting ready to sell things online and maybe try to get a part time job for the Christmas season... might be able to do that for the short term without someone's illness taking it away.

Couple things.... If you really can't stand it, you CAN move away, before this becomes years and years of caring for relatives. Or, can you cook? You can do meals for people, or work as a companion (no housework, cooking, etc) a couple hours a day. I had two clients for two hours twice a week last year; only one this year, because I also have my mom to keep up with, but the families paid well and were happy to have me come and entertain their LO, take her out somewhere (she pays if it costs money), sit in the sun and talk to her, sort her stuff , write notes to people and Christmas cards - any little thing that pleases her. I'm also another pair of eyes and ears to make sure she's ok in the AL, NH, or at home; you won't believe how often that's come in handy. If you don't mind being with more elderly people, your clients would not be family and in some ways much easier for you - oh, by the way, we're friends now, and she introduces me as such - it's nice....

Gosh, this is hitting home with me. I'm relatively new to the constant caregiving scene, having recently placed my mother in assisted living near us. But even though she's in assisted living, she's taking my life away. Her room stinks every time I visit. She's become angry and hateful toward me. She calls multiple times every day and night demanding that I take her back to her home (which she's not able to live in anymore). I visit her 2-3 times a week and all she does is berate me. Then she calls  the next day with more of the same. She interrupts me at work. I'm exercising less than half what I once did, all because of her. I'm at the height of my career but can't do the things to keep moving ahead because of her. I've always loved her very much, and still do, but she's lashing out in very hateful ways toward me now, even as we've spent loads of time and money dealing with meeting her needs.

rwbpiano,
It IS hard when they lash out at you, when you are breaking your back trying to do everything for them.
Your profile doesn't say if your mom has dementia or not. My mom turned evil at stage 5 Alzheimer's. Accused me of terrible things, then physically attacked me when I had to place her in memory care.
It really is hard to wrap your mind around.

This is the place to vent. Do it regularly. It helps!

Make sure to take care of yourself, even if it means taking some time away from her. Get back into exercising. It's necessary to maintain your sanity.