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.
You could call your local Area Agency on Aging, (in the US) and have him evaluated as to what level care seems appropriate for him. Someone else there at night so you can sleep is also an excellent idea. But it sounds like you are going to reach a turning point quite soon, and it would be best to get prepared for it.
Best of Luck to both of you.
The behaviors you are talking about are very common with dementia.
Please make sure you have a durable POA in place and he has a thorough evaluation.
My Dad exhibited those behaviors while living alone, and the behaviors progressed very rapidly. He became so argumentative and angry we could not even stay in the same room with him for more than 30 minutes.
He ended up being dx with vascular dementia and medications have helped a lot.
You are a kind and loving daughter-burn out is real. You cannot do this alone.
Door alarms or motion sensors in the rooms/hallways can be used to wake the caregiver and not you.
Some assisted livings offer respite care rooms for short stays 3-30 days. This could be an option to give you some breathing room to get things organized and you some much needed personal time.
Also if there is family, siblings, nieces, nephews, grandkids, etc that could take night shifts or even some day shifts would be great.
Adult day programs are great so you can run errands.
Check with your local Alzheimer Association chapter for resources they offer.
#1 - you do need support as no one can care 24x7, it takes a huge toll. This is harder than an infant, because you’re right, he could get up and wander off.
Good luck and realize you are being an amazing daughter caring for your dad. But you also need to care for yourself because you need to stay healthy.
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.
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.
Unless someone has gone through what you are going through they will NEVER understand or have a clue. It’s the mental part that one goes through in caretaking , that is so tremendously damaging.
Mom so sorry you are going through this. By the way, I’m getting indoor and outdoor camera set up as well so my mom will stop thinking someone is outside waiting to break in. Just knowing s bought them has already made her much more relaxed. I haven’t even put them up yet!
God bless you and don’t forget to look into hiring someone... you need a break... NOW!
You may also find you have anxiety problems as you adjust to having someone else in the house with unpredictable behaviors. You are also going through a lot of adjustments in your life having moved to care for your Dad. Change is stressful! If you don't seem to adjust in a reasonable time (at least enough to sleep well), consider discussing with your doctor if a mild anti-anxiety medication would help.
Mothers with young children usually develop a way of sleeping where they can become alert very quickly when the child wakes. I sleep this way now that my Mom has moved in with me. Since my room is across the house from my mom, I have a baby monitor in the hallway outside her room so I can better "hear" what's going on.
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?
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.
The hallucinations are awful. When they progress to a paranoia stage it will be something I cannot handle. Knowing just when that may happen keeps me on edge. Probably I need to get a plan and location in place just to be more ready! But that is hard when my spouse doesn't think he is that bad off. I'm not sure I am ready for that either!
I share all this just because I think there are many of us in similar situations.
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...
I have two aides for Mom. I work and I’m an only child with a husband. No children. The aides share their hours. My suggestion is to try to get someone to give you some rest. You are always going to worry about him but you may get some peace of mind knowing he is being looked after at night. I wish you well.
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.
I know you feel Dad is OK at this point but I would suggest finding an AL now. I say this because when my Mom was in her AL they brought a man in who was pretty much into his Dementia. The front door had a pad to key in the code to get in. But the fire doors could be gotten out of. They had alarms but after so many seconds the residents could get out. This poor man tried to get out continuously. I heard one of the CNAs say he was brought in too late. Just before Mom left, I hadn't seen him. Have a feeling he went to a NH. Its been said on this forum, and I hope I can explain this correctly, that you have to get them used to an AL while they are still pretty much with it, so they can except it as their home when they are further into the Dementia. Your Dad will only get worse. He will need more care than you may want to give. Dementia can be a long road. My Moms journey was 6 yrs at least and some subtle signs before that. ALZ can be years, my Aunt 12 from diagnosis to her passing and there were signs before that.