Caregiving guilt; Am I wrong to understand that I cannot ‘supervise’ 24/7?

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Sometimes I feel enormous amounts of guilt because I am caring for my dad (84) who is in excellent health physically, he can shower, dress himself, eat, he is continent, takes no meds, can read, hearing is ok (most of the time), non- combative. But my presence is needed because he is in an altered state of reality 90% of the time. The main point of my daily frustration lies in the fact he does NOT want assistance with ANYTHING even when it is apparent he is struggling.


My catchphrase as of late is “this is not an insult to your manhood...”


His memory is that of a gnat at this point. He gets upset that I don’t “see” the things he sees (which are many...)


The point of this is to say I read so much about caregiver burnout, but I don’t keep track of endless trips to doctors, keep tabs on enormous amounts of meds, deal with the frustration of convincing someone to bathe, eat, dress. I am not caring for someone who is bedridden, incontinent, wandering. Yet, I feel myself reaching a boiling point when my efforts are pushed away. I catch myself wondering if my “it is what it is” attitude will truly help me along. Are things really that bad? Is mental burnout the same as ‘caregiver burnout’ ? truly, in comparison I don’t consider myself a ‘caregiver’... more of a ‘supervisor’ at this point.


Am I wrong to understand that I cannot ‘supervise’ 24/7 ? My gut says even when I am sleeping, my back burner is on (he has wakened me several times for various ‘intruder’ reasons...) I feel even while sleeping, I am subconsciously thinking of the fact he could be wandering through the house and I wouldn’t know it. Should I hire someone just to be in the house overnight so my sleep can be solid? Is there such a thing? Am I being too much of a pansy? I feel the comfort of knowing someone else is available while I sleep may help me better endure this marathon.

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You absolutely are a caregiver and you are absolutely NOT a pansy. The issues you are dealing with are stressful, upsetting and overwhelming and yes, if you can manage it, hire someone to be with him overnight so you can get some solid sleep. Is there any way he would go to a day program to give you the ability to have free time for yourself during the day to take care of life in general?
There may be some meds that can help with the "hallucinations"(?) he may be having, or meds that can help him to feel calmer and less stressed over what he cannot and does not remembe.
Please do not compare what you are going through to anyone else's caregiving journey. Yours is stressful and burnout happens for a host of reasons without needing to minimize your stresses in comparison to others' stresses.
If moving your father to a supervised (memory care) facility is an option for you, please consider that. As stressful as it is to watch a parent decend into dementia, it is much more stressful to live with it 24/7 vs going to visit for short periods of time throughout the week. It's painful enough to lose a parent while he's still here.
Think about what your options might be. Once we explore options we tend to feel less stuck as we explore and are open to other possible arrangements, and that alone can help to ease some stress and burnout...
wishing you greater ease... and we breathe...
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Reply to LorenMGG
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LH, I know what you are feeling.  Am I ( or WAS I) truly a "caregiver" or only a "supervisor" when I am (was) ONLY?!? taking care of my Mom's Ancillary ADLs (driving her to doctor appointments, or church/social events, paying her bills, cooking her meals, cleaning our house. etc.)?  Do I have the right to post a question or vent my feelings on this website when I am ONLY a "Supervisor" of my Mom?

Mom and I lived together for 9 years until she experienced a sudden decline related to depression because of the death of her younger brother (age 83) and older sister (age 91) within 1 month of each other. Mom is now in a Memory Care Unit and needs help with all ADLs (dressing, bathing, transfers with a "Easy Lift", etc.), and uses a wheel chair instead of wheeled walker.

Like you, I slept with "One Eye Open and One Ear Open" and my mind never really went to sleep as I was always listening for Mom to get up during the night.  The lack of restful sleep caused my stress level to rise and I was ready to move out of the house when Mom unexpectedly was hospitalized and then admitted to the nursing home in May 2017.  {Mom said repeatedly that if I hadn't been living with her, she would have ended up in an assisted living facility 4 or 5 years ago.}

If you are concerned about your Dad wandering at night, there are various visual items that you can purchase that help you monitor the person who is wandering and/or help deter people with dementia or Alzheimer's from going through a doorway. Bed alarms work great and can be purchased pretty inexpensively on Amazon. A baby monitor can be placed in your Dad's room. There are “Stop Signs” made especially as visual deterrents for wandering that you can put across the door leading to the outside of the house. Many of the signs are attached with Velcro-like fasteners so that you can take them off anytime you want to.  The sign will have to be removed prior to your loved one going out the door. 

https://www.alzstore.com/stop-sign-banner-p/0134.htm

https://www.caregiverproducts.com/posey-stop-sign-door-banner.html

https://www.mindcarestore.com/stop-sign-banner-p/mc-0134.htm

Just because you are a "Supervisor", you are also experiencing the stress of caregiving like everyone else.  Take care of yourself.
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Reply to DeeAnna
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Is there an adult day care in your area? It might be good for both of you--he gets the social interaction of new people and you get a break. We kept my father in day care even after we hired live-in help because keeping a dementia patient engaged and active is really more than one person can do.
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Reply to Weary418
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If you tried to hire an experienced person to "supervise" 24/7 with no breaks I bet you wouldn't find anyone! Sounds like slavery to me, even if you don't feel it yet.

Having no back up and taking no days off does not serve your LO well in the long run. What if the next emergency happens to you? I suggest you find a guy your father can relate to and have him "visit" on a weekly basis. Leave the house during the visit. Increase the hours (paid) each week until you can get away for a weekend.
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Reply to Bigsister7
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I think everyone who has an Alzheimer's/dementia patient they care for needs to remember that there are different stages of illness. It's heartbreaking to see someone you love losing a little more of themselves every day. Caregivers go through an awful lot physically, mentally and emotionally. You can't blame yourself - you did not give this illness to your loved one. All you can do is navigate through the stages with them as best you can. Forgive yourself when you make mistakes or get impatient. You'd have to be a saint not to lose it sometimes. Look into different situations that may help you get the rest and me-time you need or you'll be of absolutely no use to anyone else. A rested, unstressed caregiver is much more effective than one who isn't. Try a door alarm (can be purchased at Home Depot or Amazon, etc.) to alert you to your dad's movements at night - it costs about $15 but that's a small price for peace of mind. I also like the baby monitor idea. You could probably get a deal on one at a garage sale. There are hired caregivers who work overnights - doesn't sound like he needs nursing care, so it won't be as expensive. The main thing is - take care of YOU so you can take care of him. You aren't a wimp or a pansy - don't ever think that. You're doing what a lot of us are doing and going through what all of us go through. Sounds to me like you're handling it well.
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Reply to lablover64
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I felt horribly guilty but was so fried after I don't know how many years of not being away...but being so conscientious I didn't want to go too far from my elder parents. My head is always active thinking about them, planning, worrying, advocating, escorting...and so with the support of some others, and even though there were other places for the $$, I got the best deal I could and went to a lovely hotel about 35 minutes away. For the past 3 nights (yes, still there, leaving later) I have slept. Slept through the night. Slept in a comfortable temperature on a good mattress (no time/$$ to get a new one quite yet). Slept in peace and quiet not awoken by the back and forth in the hallway. And I am here to tell you...it makes a difference.
You ARE caregiving, you are susceptible to burn out. It's not clear if what you are dealing with is dementia, but if you can, you might want to get an assessment that might consider all types of dementia. If you have a local Alzheimer's Assn they may know resources for many of the issues. I know we don't have anyone who would spend a night or the funds to regularly pay for that...do you have any relatives that could spend a night? The AA may also have suggestions to make your home safe. Put in all the safety equipment, alarms on doors...and then maybe you can just let it go and go to sleep. You might have to consider locking him out of certain rooms...i.e. the kitchen where he could get in trouble.
All the studies these days are stressing the importance of sleep...so for our own future well being we should do our best to get it.
Yes, mental burnout is still burnout. It is an exhaustion. When I got away I just wanted to stop the madness, break the cycle from my own health issues and my parents issues. I clean, do some cooking, have to sneak around so my mother doesn't get snotty because she is blessed to have someone change her linens even though in her mind she takes care of that herself. My only sibling out of state has never offered to make a trip in just for me to escape. She comes in twice a year if that, limits it to about 2 full days, and takes very good care of herself and her own needs.
These days off have taught me something that I don't know if I will be able to do...but I think it is important to have something to look forward to, to a break of some sort...whether it is one or two nights a week of sleep...or a long weekend every few months. Do you have guardianship or POA of you dad? I'd be checking in with an elder law attorney asap...and maybe set up a caregiving plan where you are potentially compensated...but at the least, hiring someone if Dad has the funds to keep watch so you can sleep. Good luck.
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Reply to gdaughter
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All caregiving can be stressful. Even “supervising” someone. It is a huge weight of responsibility and yes, it can cause “caregiver burnout”. Take care of yourself. Perhaps there is a way to get in some outside help to give you some time each week to totally put your caregiving responsibilities out of your mind and do some “self-care”. I know that when that can happen for me it is so very refreshing and gives me a fresh start to keep moving forward on the caregiving journey I am on. My mom lives with me and can do most things for herself. But there are times her mind is not good and also times she wanders at night. I don’t have to do all the things many have to do on a daily basis, but there is still that very heavy weight of responsibility that comes from having the full brunt of the responsibility for a loved one, or anyone for that matter. I work from home, but my job is outside managing a very busy farm....I am in and out of the house many times a day checking on my mom and she is always on the forefront of my mind. I totally get it.
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Reply to gardengirl100
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I saw in your profile that you left family and quit your job and moved 300 Miles to live with your dad. You don’t say what type of dementia your father has. But regardless you sacrificed A LOT to live with him. So that is not a reason for guilt or calling yourself a pansy. You moved to care for him so yes you are a caregiver ...there are levels as you mentioned. Regardless it is a mental strain on all of us no matter what type of care we give.
If you can move him to a memory care unit then that is an option...maybe near where your family is. Or else realize you could be in this position for years and it won’t be getting easier. The sooner someone’s moves the better and the socializing and exercise is helpful and necessary. Being only with you 24/7 is not good for him or you.
If I may, I would suggest you see a talk therapist in order to vent and also to get coping skills. Hire some people to come in so you can get out and be just you ... get exercise, go have lunch, a movie, a massage, or whatever. Also consider checking him into respite somewhere and go visit your family for a week. But you need a break or you will crack and have a melt down at some point. Ask me how I know!? Please post anytime, no guilt...and let us know what you decide.
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Reply to Harpcat
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==>My catchphrase as of late is “this is not an insult to your manhood...”<==

Yes it is an insult to his manhood - you made it one by using this phase. Is your tone when you use these words as inpatient and condescending as the words themselves?

Please try something less emotionally loaded and insulting like "everyone needs a little help on occasion" or "you've helped me out plenty of times, let me return the favor".

Maybe the greatest challenge caregivers face when interacting with memory impaired LOs is responding to the repeated questions/interactions with the same _kind_ tone on the tenth repeat as the first. Our LO cannot avoid repeating behaviors they do not remember taking - can we control ourselves?
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Reply to TNtechie
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Sugarboo Aug 13, 2018
Not trying to be insulting or start trouble, but have you ever had to take care of an exerly person who doesn’t want help, but wants you there 24/7 and you get no sleep? And you were doing it for over a year or more? Let me tell you that with some moms and dads, it can be extremely trying and the most intelligent and kind person in the world will change their tone and demeaner when they are sleep deprived and are on call 24/7 mentally and never get a break. We are never taught in school how to be verbally elequent and how to manipulate our words and fine tune them for every situation. So you try all kinds of things to say, in hopes that the person you are caring for, is not insulted, and goes into defense mode. Walking on eggshells 24/7 is demanding and emotionally depleting. I think you say all kinds of things to try and keep the person calm as you try to explain things things or tell them things in a manner to not start explosive behavior on their part. Most of them will immediately put up a huge wall and do the exact opposite. And most, no matter what you say and how you say it, will say “ no” to it, for whatever reason. It’s always extremely delicate when you try to say something to them and each time you start a conversation, you have to spend a few hours I. Your head trying to come up with a way to approach them and start a conversation without them thinking you are going to harm them in any way. I’ve been all through this and if you have to do it for 24:7, without any help or breaks, you try anything and everything , just to find a way to communicate. It’s hard. It’s so incredibly difficult and it is depleting to the caregiver. This is why we get caregiver burnout. This mental part is the worst thing anyone can go through and I don’t wish it on my worst enemy!
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There are all types of burnout - mental, emotional, physical. And it can seem like a vicious circle! If you don't get good quality sleep - you will quickly become overwhelmed at the slightest annoyances. My mom is in great shape at 91 - still drives! But her hearing is going and it can get very tiring to repeat everything 3 times. She refuses to even get her hearing checked much less wear a hearing aid. I come home from work and the t.v. is literally blaring - so jarring after driving home in traffic! I'm the type of person who needs their peace and quiet to truly feel energized. I recently felt like I was at my wits end - as we don't always get along since she seems to still feel like she needs to "tell me what to do" and I'm almost 60! I work full-time, own my home, take care of everything, take her out to lunch/run errands for her/doctor appointments, etc since I'm single and still that is not enough to please her! She finally left for 2 months to visit other friends/family. What a relief that was! I realized just how much I loved my home, and being alone. She tells me that I'm not happy, complains about stupid little things but I realize now she is the one who is not happy and really never has been now that I look back on it. My story is too long to go into here but we have lived together off/on for 20 years. THAT is a lot of my adult life I have given up. It's hard to date when you mom lives with you! But my family doesn't seem to think I'm doing "much" as they never ask if they can relieve me so I can go out of town - spend the night somewhere. She is set to come back and I've already told her I cannot do everything. She needs to either call my brother or use my neighbor who has offered and is also a friend. I guess the bottom line is - DO NOT try and do everything. And you need a break to do something you truly enjoy. I refuse to give up my home/life/friends to just sit at home and "babysit" her. I need to work - plus I need to stay "engaged" with the real world. Good luck!
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Reply to Texasgal
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Sugarboo Aug 13, 2018
Hi Texas Gorl... I’m in a similar situation as you too. I feel for you! Isn’t it amazing how getting alone time brings you back to life? ... but also makes you realize what you are going through and how stressful it is? No one really knows and they really don’t care, all they care about is not having to take over for you and ruin THEIR lives... ( you know, sisters and brothers that it). They all make you feel like you are complaining for nothing and that you are ungrateful for what your parents did for you. Someday those people that make you feel bad will all have their day and finally understand what you are going through and went through... it’s called “ karma”, and it’s alive and well. So sorry that you are going through this!( not saying that YOU are going through karma. I’m saying that people that don’t have any sympathy for others are the ones that will go through the karma.) Hope you can get some relief soon. 😇
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