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.
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...
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.
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.
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.
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.
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?