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This roller coaster of my mom seeming like she would only live a week or two to her being perky, eating again and wanting to get rid of her 24 hour caregiver has me reeling. Summary - She lives at home, 86, cancer, weak can't walk without walker and at that very unsteady, urinary incontinence, diarrhea when she eats, diabetic. It is not safe for her to be home alone but now she says she doesn't need the care. (which she does). She is fiercely independent and strong willed which has gotten her this far. I am exhausted from the ups and downs and downright confused by this whole ride. My brother must think I'm crazy because when he finally gets around to calling her she's perfectly fine. I swear she is misdiagnosed and all her doctors have always been wrong.

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Yes, absolutely, every caregiver needs an occasional respite! When I found myself waning sometimes during caregiving for my mother, I asked 2 people to take her to appointments because you'll crack under pressure!
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Dear shedampo,

I hear you, my friend. It is a rollercoaster and the unknown is very hard to deal with. Please remember to take care of yourself. And if you need a break, you need a break. Please don't question it, otherwise, the anger and resentment will get the better of you. Find a way to do some self care. It is critical.

With my dad, I never did. I just went to work and took care of him after the stroke. It was a terrible mistake on my part. The last year of his life, I was horribly angry and resentful. I felt like I lost all my compassion for him. I deeply regret this.
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I understand the pain and frustration that you are experiencing. I remember what it was like for me when I was caring for dying family members. A sign that I was "going off the rails" was when I would start feeling that even one more small thing--losing the key to open the oxygen tank, realizing that nursing home staff hadn't picked up the garbage in a week, feeling inept to deal with breakthrough pain--would push me literally over the edge. Sometimes it helped me to share my feelings with a friend although I found that only someone who had been through a similar experience could understand that I was going through. Sometimes I needed to talk to the professionals (i.e. hospice nurse, physician) and lay out what was happening. And sometimes I just needed to walk outside and breathe some fresh air and try to calm myself down. Do whatever works for you!
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No answer, just in the same boat. Brother calls and Mom perks up (he's in FL we're all in IL). He comes home about once every 18 mos and she rallies and gets DRESSED and wants her hair combed. (We only see the hospital gown and refusal to leave her NH room). I could write a novel here, but just raising my glass of diet coke to you and saying, you're sure not alone, Sugar. :(
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I think all caregivers need a break! Our situations are different, but one constant is the physical, mental, and emotional exhaustion, and the frustration over not having a life. Right now my number one role in life is to be my mother's caregiver. I'm not working right now (will be again in the fall), but still have an aide come two days a week so that i can have a few hours to myself, to go to the gym, or just to sleep.

Recently, I was out of town for work and it was like a vacation - no chores, no housework, no cooking, and no potty duty with Mom! I put her in a nursing home for respite care, so I didn't have to worry about her. She wanted me to hire aides to care for her at home, but the logistics of that are overwhelming - and then sometimes she think she can be alone with no help, when she can't even get to the potty chair without help. She has arthritis and vascular dementia, moans, cries, says she does not want to live any more, and even the aide noticed that she gets angry and takes it out on me. I've lost count of how many falls she's had. Mom does not want to spend her money for aides, but I finally told her that I need this for my health or else I will wear out, and she had to accept it. She does realize that basically she is in a nursing home and I'm it, and if I break down, she will have to move to a care facility.

I have to admit that, after the last time she had a UTI and got so weak that she had to go to rehab, that it felt like a vacation. When she calls me to do things for her, get this and that, it is a lot, but hardest is the emotional labor, comforting her when she cries. I feel guilty because I do not enjoy caregiving... and can't conceal that from Mom, and she has some idea how difficult it is for me. I just tell her that now it is time in her life for her to be cared for.

These boards are a sanity saver! Truth is that sometimes caregiving just sucks, and only other caregivers know what we have to go through.
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I tell my wife that the doctor has the caregiver come by to check on me that I am doing a good job of looking after her. I know God forgives me overtime I tell her a story. She forgets it in 2 minutes and asked the same question again only to get the same answer. I fine that if I am in her world things go better than if I try to get her in mine. : ))
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Take a break or it will break you - then where will they be? - you can't take care of your LO if you're 6 feet under!! - do as the FA's on planes say "secure your own face mask first" - so secure your health & sanity otherwise YOU ARE BEING SELFISH BY NOT PROTECTING YOU, SO YOU CAN HELP THEM
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My mom is / was very independant as well. We began our journey well enough, with mom being agreeable with the changes but as she felt better and more herself she started doing the things she shouldn't be doing. Cooking on the stove was one. She would put a pot of water on to boil and walk away until the water was gone and the pot burned. I tried to compromise, sit at the table when cooking do not leave the room.....nope. bought a kitchen timer to carry in her pocket.....nope. Bought a steamer with auto shutoff.....nope. only cook when someone is home and tell them you are cooking.....nope. Left newspaper articles on houses burning down and deaths .....nope. Many burned pots later, I just took away all the burners.

She would take her meds  and supplements until she was feeling better and then stop. She didn't need them anymore she was better. Sigh.....I asked did she truly prefer to live in the hospital since the nurses were so much nicer than me?
Because I could make the arrangements right away....

When she resists something new.....assist or medical device, safety feature, new bed, furniture changes, in home help, new routine's, etc it goes one of two ways. I tell her the item is really for me and my sanity because I worry about her and this "X" will make me feel better and more confident leaving her at home even though I know she may not need it right now.
OR
As the Health & Safety Officer , I have Veto power on any safety related issue. Complaint denied. I will take thoughts into consideration but I have final decision.
It was a rough and bumpy ride but it's gotten better. Unfortunately it took a nasty fall doing something she shouldn't have for reality to sink in a bit and gain some trust in me, that I am truly looking out for her. Luckily 2 of my sibs have witnessed both mom and myself in action and know it's hard , frustrating WORK. I'm better at not taking things so personally as well which helps.

Walk away and take a break? Every single day. I use my dog as an excuse to get away , take a walk, and breathe.

One day at a time....

When I listen to the song "Werewolves in London" and I smile a little too big or too long at the line "Little old lady got mutilated late last night" I know it's time for a vacation.
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I know it is draining. If you are trying to juggle work, relationships, caring for Mom...it's a lot. Take time for yourself. When a caregiver is there do you go to lunch or a movie with a friend? Do this at least once a week, have a set day and time that you know is yours. Mine was from 9:30 - 2:30 Wednesday's (I should have taken more time).

I found the unknown to be stressful. You can go years not knowing when you will get your life back. Thus, you cannot make any plans for your future. No one wants to live that way. 

Hang in there, this too will pass. It is within your power to make this passing of time easier for you. So, set a day and time that is sacred for you and your needs. Arrange to have a caregiver on hand that mother pays for.  Get a hair cut, go clothes shopping, have margaritas and nachos with a girlfriend - whatever makes you happy. You've earned it.
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I am the family caretaker for my husband who is afflicted with quadriplegia. He lives at home. With the "help" of a morning and an evening aide (often the aide doesn't show up or is unqualified), I've been his primary caregiver and advocate for the past two years. It has been emotionally draining. As he can't stay alone, I am a prisoner in my own home. When I have freedom because an aide is here, I spend my precious time food shopping, picking up meds, etc. No time to do anything for myself as I need to be back for the aide's end of shift time.

In April, I became severely anemic due to loss of blood, resulting in two hospitalization--one unit of blood for each hospitalization, then surgery to stop the bleeding. Recovery has been difficult. My husband went to a skilled nursing care center when I was admitted to the hospital in April. He is still there (June 30, 2017) as I'm too weak yet to take him home. I also developed sciatica (left side) and torn meniscus in my right knee (both of which I suspect resulted from physical demands of caring for someone with quadriplegia.

I am struggling with bringing him home. I don't want to submit myself to the emotional and physical impacts. This episode really scared me. On the other hand, he always asks me when he can come home. I respond that we need to take it day by day until I feel strong enough. In my heart, I know that skilled nursing makes more sense. I visit him every day, go with him to doc appointments, advocate for him, keep on top of related paperwork.

In answer to Shedampo's point "I am exhausted from the ups and downs and downright confused by this whole ride," I get it. No need for a video. Tell your brother that you are taking a break (a respite) and he or another family member needs to care for her. Alternatively, hire a 24x7 caretaker or arrange for assisted living. Get the family to help pay for expenses. (If your mother has a long term care insurance policy, use it.) Doesn't matter what your strong-willed mother (or your brother) has to say. Then follow through. Tell your brother that it's his turn. It is difficult, and has to be done. I've learned the hard way. Take care of yourself by being proactive.

Do you have durable power of attorney for her? If not, get it or have your brother get it. There may be a time when she needs the legal support. Same goes for a Living Will and Healthcare Proxy.

I hope this helps.
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Thanks for the topic - I too have suffered from the challenges and ups and downs being monumental and parts of the planning care process - majical thinking - my disabled brother was like that, and my keeping him looking competent so he would not look like a bum and get robbed or taken advantage of - also had the effect of making him appear to doctors and care planners, as if he was doing fine without help, for my help was invisible. That affected me a lot, and I applaud efforts to document and show the reality to distant family or others - so you can have support and compassion.

LindaLatina - I love your post, how you went to grad school and planned to care for your mom one day a week - good for you! I have longed to go to grad school, yet was so intimidated in schools that I blew my chance years back and dropped out before finishing the degree, after attending classes for 5 years and paying $34K. I still regret it, and wish I could make such time.

And I love your reply to your mom's assertion, in front of friends, "well, you may as well just throw me out with the trash..." and you saying with a smile, "well, that's an option too...." Super! Avoiding manipulation of shame is part of our need, and doing so without trying to lecture, or fight back, or engage further... thanks for the share, I love the humor. good luck with the school work: finish!
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I am always puzzled when someone suggests assisted living (AL) for a loved one (LO) who is unable to care for themselves. When my mom went to AL she and I were told they only assisted with meds, housekeeping, meals and laundry. Also the occasional doctor's appointment. If she reached the point where she needed help with bathing, incontinence, behavioral problems, etc., she would need to move to a nursing home. I don't know if this is the norm or the exception. My own experience leads me to suggest moving them only once if possible. Moving them in stages only causes your LO to spiral downhill.
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I am always puzzled when someone suggests assisted living (AL) for a loved one (LO) who is unable to care for themselves. When my mom went to AL she and I were told they only assisted with meds, housekeeping, meals and laundry. Also the occasional doctor's appointment. If she reached the point where she needed help with bathing, incontinence, behavioral problems, etc., she would need to move to a nursing home. I don't know if this is the norm or the exception. My own experience leads me to suggest moving them only once if possible. Moving them in stages only causes your LO to spiral downhill.
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Mom and I have lived together now for 5 years. She relentlessly guards her independence from everyone, including me. I agreed to let her move in, because I am her only child and she has alienated her younger siblings, who would have helped out if she wasn't hypercritical of everyone and everything.
The first three years we lived in a two story house with separate bathrooms and a common eating area. That transition period included several really loud arguments and threats to move out. My "go to" for comfort and support was never family, but friends and therapy. I don't discuss mom with our family because I do understand their position and respect it. While they cannot help with mom, they do help me in other ways, sometimes financially. I still love them and her, realizing their difficult history is much older than me.
Two years ago, I got accepted into a graduate program. We moved to another state and into a single level apartment with 1 1/2 baths. I have an office on campus (I teach while in school) where I do have time alone. She gets one day a week with me where we run her errands and get groceries. If it is a good day, we have lunch at one of her favorite places. If it is not a good day (she's looking for a fight) I make lunch at home. It is the one day of the week I do not work. I make it a point to have the same routine every Saturday that includes all the tasks she would like to accomplish.
Socially, we don't go out. I have a very small circle of friends that understand my situation. As a grad student, I have to present at conferences, do research trips to other university libraries--this means time away from home. I try to schedule no more than four days away and do call her each evening to make sure she's eaten and gotten dressed.
It is very challenging and there are times I would like my life back--I had a relationship that ended soon after mom moved in. Mom is quite healthy and will be around for a while, but I have always said to her and in general, if the time comes that she needs more care than I am able to give, she and I will part ways. I am sure she doesn't believe this and takes it on everytime I say it. The last time we were with her friends and I said this, she responded with "if that happens you can just throw me in the trash!" I responded, "well that is an option too." I smiled and nothing more was said.
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maybe you should make a video of your TRUE MOM & show him ..heck i got a camera on my computer & did it 1 time while she was so scared we was going to flood ...do i would record to show him !!!!!!it might be they hate there caregivers -like me .i know when she has a U.T.I she threatens to throw me out the house ..
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shedamp, first let me say how sorry I am that you are going through this. Second, let me assure you that YES! YES! YES! every single caregiver feels mentally exhausted, emotionally bankrupt, confused, guilty, and angry from time-to-time. I've been my mother-in-law's primary caregiver for 6 years and one summer I spent hours on the Internet researching ways to fake my death and runaway! My mother-in-law seems to "rise to the occasion" when her daughter and her sister visit/call; I too have fretted that they must think I am an alarmist or off my rocker. I finally decided I don't care what they think: my husband and I know the reality. She was on Hospice for a period of six months a couple of years ago. She had experienced a series of TIA's (mini-strokes) and she was hospitalized with pulmonary emboli. While there, the nurses implored her to use the bedpan or "risk throwing a blood clot to her heart and immediately dying". She is 93 and seems to have 9 lives! These things have helped me: this blog, girlfriends, a supportive husband and a good night's sleep. Caregiving ain't for sissies. You're not alone. Hang in there and have a cup of tea or my go to: a glass of wine!
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I think breaks are great, because there is so much stress involved with caregiving. However, if the LO is on a terrible path and making bizarre decisions that not only impact her, but, put MORE workload on you, then, I'd try to get her situated, before the break.

Being strong willed, serves us well in some situations, but, if the decisions are unreasonable and detrimental to us, then, it might reflect some kind of magical thinking. Magical thinking can cause a lot of harm. Depending on how severe it was, I might explore if these decisions, like getting rid of caregivers is something that can be tolerated. If she's not able to run her own household, it might mean that someone else needs to be placed in charge of arranging her care. (Keeping the in-home caregivers.)
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shedampo, yes, tending to our elders can be an emotional roller coaster ride, or as I was calling it Mr. Toad's Wild Ride.

Then when there is a burst of energy, the elder feels it is time to send away the caregivers, put aside the walker, and do everything they use to when they were 20 years younger.

As for the diarrhea when she eats, some elders develop intolerance to dairy products. That happened to my Dad so I got him Lactaid products to use instead, and that helped.
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AS a caretaker who has her Mom living in my own home , my advice is have her move to assisted living . I am not an expert on ASsisted Living but having my cough passive aggresive ly 24/7 because she needs attention while I stay in me bedroom to avoid her is not the way you want to live. My mom lived alone in a trailer until she was 89 and my brothers and sister were ok with that, but I lived near her and had to deal with it. Do you clean up after she soiled herself? I have to. Get her into a home because living together ruined our relationship.
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