Follow
Share

I've been my mom's caregiver for 2 years. She has dementia which took a bad slide when my dad died. I know I need help with managing everything and am trying to find a way to get that help. I hear myself b****ing and complaining about the same thing over and over. I can't stand to hear myself and reading my comments here a couple days later was an eye opener. I sound bitter, callous, narrow minded. I don't feel those things. But it sure comes out that way. I don't want to be uncaring or impatient with anyone. Certainly not others who are going thru the same thing much less my mom. We are all struggling and coping the best we can. I am looking for suggestions on how to better deal with the negative feelings and how to shut everything off to get a good night's sleep every night.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Ask your doctor if Ambien is appropriate for you, and start off at the lowest dose. No alcohol allowed while taking it. I know several people who swear by it.
Helpful Answer (3)
Report
lealonnie1 Jun 7, 2023
I took Ambien for a full year at least. No side effects at all, and slept like a log the entire time. It was a life saver. And quit cold turkey w no issues. Just an fyi since there's SO much negative talk about Ambien out there. I love it 😁
(2)
Report
I’m so sorry, NeedLove. The health toll of caregiving can be brutal. I loved my late father dearly but my 6 years of caregiving definitely aged me. (And I shared care with a sibling.)

This scenario is not sustainable. You need and deserve deep, restful sleep every night.

I see in your profile that there is a problem with your mother’s income being too high to be eligible for help. Have you looked into the possibility of creating a Miller Trust?
Helpful Answer (10)
Report

"I am looking for suggestions on how to better deal with the negative feelings and how to shut everything off to get a good night's sleep every night."

the stress, worry, emergencies are constant.
the only way i succeeded in making my life better, was by finding 24-hour private caregivers for my LOs. i couldn't find them before, because it takes a long time to find the right, trustworthy ones.

so long as everything is landing on you OP, the extreme stress will continue. the moment you can delegate some of the problems to other people, some stress will be lifted from your shoulders. the more stress during the day = the worse the sleep. i hope your mother has money to hire at least some people, X hours per day.

exercise does help to relieve some stress, but it's not a real solution. when you come back home to your mother (let's say you went out running), you're right back in the stress.
Helpful Answer (7)
Report

As long as continue on while making no changes, there will be no changes.

So are you willing to make changes or not?
Helpful Answer (7)
Report

The best way to deal with this is to move her into a home. You can then become her daughter again.

She can self pay until her money is gone then apply for Medicaid.

Good Luck!
Helpful Answer (13)
Report
CaregiverL Jun 11, 2023
She doesn’t have to go broke if she consults with elder law attorney. A plan of action will be created.
(2)
Report
You can take Ambien or the equivalent, as Fawnby said. But the bigger picture is the stress and soul crushing toll this dementia caregiving is taking on YOU, and what your plan is to address it long term.

Love comes in many forms, including self love. You can love your mom and yourself at the same time by recognizing that she needs more care than you are capable of giving her. This is a simple fact, not a shortcoming on your part. I had a mother with dementia and other health issues her whole life that made me realize I could never care for her at home. I watched her take her mother into our home and ruin her life, my life, and grandma's life in the process. Why? Because it was "the Right thing to do" except it wasn't bc the price was too high! We all suffered while mom stood on her soapbox preaching about Doing The Right Thing! Obligation brings on a false sense of what's "right" and makes us feel like we MUST leave our blood on the floor as proof of love for a parent. My mother was beautifully cared for in Memory Care Assisted Living and we managed to preserve our relationship along the way bc I wasn't a bitter, resentful and burned out caregiver as I'd have been with her living in my home.

Look into Memory Care Assisted Living, Skilled Nursing care with Medicaid and a Miller trust, and/or in home caregivers 8 hrs a day at the very least. Speak to an elder care attorney about your options, it's the best way to go. Dementia care requires a team approach and is normally way more than 1 person can manage. It's not you, it's the disease.

Wishing you the best of luck with all of this.
Helpful Answer (11)
Report
KNance72 Jun 12, 2023
I would not suggest ambien it’s a dangerous drug and can cause Blackouts . She needs sleep .
(1)
Report
I’m sorry you’re going through this level of stress, your body and mind are definitely trying to get your attention and tell you something. I hope you’ll listen and make changes to restore your own health, even emotional health, once it’s gone it’s hard to regain. Time to take an honest look at sustaining the level of caregiving you’re doing on your own and what you can do to make it better. Please take care of you, you matter too
Helpful Answer (9)
Report

Daughterof1930 tells you: "Time to take an honest look at sustaining the level of caregiving you’re doing on your own and what you can do to make it better. "

I couldn't agree more. You cannot sacrifice your own life on the altar of caregiving. Your Mom has had her life. You have your own one life to live, her gift to you. It is time to recognize now that you have reached the limits of what you can do. There will be a lot of grief in this, but it is worth the grieving.

I am so sorry and wish you the best.
Helpful Answer (10)
Report

It sounds like you are burnt out completely. I can relate to this truly. You can get respite care for your mother in order to give yourself a much needed break. That will help with a lot of the symptoms your experiencing. Respite care is offered many ways depending on where you are and your circumstances. I will list a few links that have been really helpful for me while going through this. I hope this helps you. <3


https://www.healthline.com/health/health-caregiver-burnout

https://www.healthline.com/health/respite-care#:~:text=Respite%20care%20professionals%20can%20assist,General%20medical%20care.
(If you read through this one it has many resources and links that can help you find a choice that could work for you)
Helpful Answer (8)
Report

Bartley has a really good answer.. MIL had to do this.. I think she got it approve by either her doctor order hubby's doctor..
It's the airplane affect... put your mask on first, then help your child or LO...
If you go down, who is going to help mom?
breathe.. start looking at places near you... If you find one.. go back and tour it again, just stop by and see how they treat you, etc...
Ya, I was sleep deprived... My spouse finally saw that I wasn't sleeping.. I would go to Moms at night, watch her, shadow her, get up in the AM, go home, get our kid ready for school, go to work, come home, get dinner, and then .... REPEAT...
so, you have been on here for awhile... start looks for AL... It's a B..ch... and you will feel you dropped the ball, and feel guilty about it... JUST DON'T... It's hard to get through that THICK WALL OF GUILT... I'm chiseling away at it,,, have been for a few years now... then I patch it back up, and have to start over again.... What was that game called? Tetrus? you have to knock down a wall, as it is repairing itself.. If it goes completely back up to the top of the screen --- you lose... so much fun...

pacman was better...
Helpful Answer (4)
Report

Just read your profile. Your mom needs more care than one person can provide for her. She needs a complete staff at a facility.

It’s emotionally and physically exhausting to be a caregiver.

It’s completely normal to become overwhelmed, frustrated and depressed while caring for someone who needs as much help as your mother does.

I felt the same emotions that you are feeling when I was a caregiver for my parents. It is tough!

You must take care for yourself. If you become sick then your mom is left without care. It’s better to seek outside help. I realize this is a problem for you because you say that your mom does not have the resources.

Contact Council on Aging in your area. Ask them to do an evaluation of your mother’s condition. Ask what they feel is the best way to find help for her. Explain that you are single and must have time to operate your business.

Or you could contact a Medicaid specialist in your area and explain your mother’s financial situation to them.

You say that you feel like you will have a nervous breakdown and that you have self hatred. Please know that you have done your very best and that you deserve a life of your own.

Your mother has Alzheimer’s disease and isn’t able to think rationally. You say that you are the only one who is responsible for her care. This doesn’t mean that you must do the hands on care.

You can get her situated in a facility and then go back to being her daughter and become her advocate by overseeing her care. Your mother will adjust to her new surroundings.

Wishing you peace as you continue to work on a plan to get your mom the help that she needs. I truly hope that you will be able to spend time with your precious dog who is nearing the end of his life.

I’m so sorry for the loss of your dad. Of course, you miss him and you deserve time to yourself to grieve and heal from everything that you have been through.

One more thing, disregard all of the negative comments that your family has made. They don’t know anything about what it takes to be a caregiver for a parent who needs an enormous amount of care. Tell them that unless they have walked in your shoes, they have absolutely no room to criticize you!
Helpful Answer (22)
Report
InFamilyService Jun 11, 2023
Beautiful response to NeedLove2 and all the information she needs. Great job!
(5)
Report
You are still grieving for your dad and now exhausted and burned out.
You have to protect your health first or your mom will have no one to help or make decisions for her care.

The stress will severely damage you. After my dad passed 2020 caring for mom with part time caregivers brought on a stroke and heart surgery for me, an active healthy 65 year old. Please hear me!

While you are deciding on a care solution can you hire some part time help?

One more thought.....the mom you had is gone and you now have an ill senior to care for. Just do the best you can. Try to find more rest.
Helpful Answer (10)
Report
Animallovers Jun 12, 2023
Infamilyservice, I am close behind you. My mother is still in independent living but with either an RN I found on care.com helping her four hours a day or a friend of mine, also an RN, staying with her a few days a week. My friend and I live about two hours from my mother so it is easier for her to just spend the night. (My mother doesn’t like how two of my dogs bark so I can’t do the same) and another assistant twice a week to help with things like cleaning and doing errands to take some of the load off the other two. I go up to take her to appointments, visits, and I sometimes have to bring her down here for medical care I can’t find in her area. I thought with all the help it would be easier, and it is to some extent. I still spend half of every day on both doctors and caregivers schedules, ordering supplies on line, problem solving on the phone with the others, and talking with my mother at least once a day on the phone.
I am 65 now and haven’t had much time for my own care. (I do try to keep involved with my volunteer work which is, thankfully, flexible.) I am trying to work on that too for the reasons you have mentioned.
Now that I have found heavier duty incontinence products on line than are in the stores I plan to figure out the rate she will go through them so I can just get weekly deliveries. I have a glucose monitor for her and it is the women with her daily who make sure it is charged. Fortunately she has not had a low BG episode and instead runs high which is not ideal but not immediately life threatening. She isn’t on insulin but jiardiance , which doesn’t help with her incontinence since it causes her to pee out the excess sugars, but doesn’t tend to cause hypoglycemia. Since she had a double mastectomy over a decade ago for breast cancer she has needed a compression sleeve for one arm and they help her with that as well. Her doctor said that assisted living would not be a bad idea for her at the last appointment but we are trying to go with in-home care for now.
I guess it is telling that I started with trying to say that I recognize that my health is being put on the back burner and I wouldn’t be surprised if I had something along the lines of a stroke at 65 but I have ended up, again, centering on my mother.
Thank you for the reminder of what can happen! (And yes, I know that I have encouraged others to make a point of taking care of themselves first but it is definitely easier said than done!)
Anyway, we all need the reminders to take care of ourselves as well!
(0)
Report
I hate to add one more "problem" to your list of things but...
Are you mom's POA? Since they started paperwork but never finished is this one of the things left undone?
If you are POA you can take steps that will help mom. Without it it might be more difficult. (If no POA Guardianship may be needed and half sister could file to obtain Guardianship if she wishes...just a thought for you)
Was mom or dad in the Service? If so the VA may provide help or mom may be entitled to Aid and Attendance. (only if it was her second husband that was in the service, if her first husband was a Veteran once she remarried she no longer is entitled to first husbands benefits)
Mom needs more help than you alone can give.
If mom has funds she pays for caregivers.
You can check with resources in your area to see if help is available. Many Senior Services have Grants that can help pay for caregivers or other services that can help.
Your local Area Agency on Aging may have resources.
Alzheimer's Association should have a list of resources in your area.
Helpful Answer (2)
Report
CaregiverL Jun 11, 2023
I had someone do assessment for home care from grant & every week they called that they couldn’t find anyone! It was referred by Area on Aging.
(2)
Report
I hear you...and applaud you for all you do for your mother. I know I couldn't care for my mother at home, hers or mine. My mother is in AL and almost totally disabled but her mind is still pretty good. Even though I thought things would be easier on me since we moved her to AL, I am still stressed out most of the time. I mean they are taking care of her but she is still demanding of me for a lot of things. It's the constant demands from her to make sure she has everything she needs from incontinence supplies - which seems to be never ending requests for every little things. This might seem trivial but it is stressful for me. She is apparently totally incontinent and I am running almost daily to keep up with her supply! She can go through 20 pads and underwear a day and I swear some are just missing. In addition, to her blood sugar monitoring...the AL doesn't do a good job with that - so now it seems to be on me to make sure she doesn't go into a diabetic coma - I got her a continuous gluclose monitor, and now I'm responsible to making sure it's changed and I get calls late at night if it's running out and needs changing! I am the only one of 4 siblings that does most everything for her, I do all of her financial stuff and banking, paying bills, etc. I deal with her health insurance and any other issues that pop up and they always seem to. I order her clothes as she seems to be gaining weight even though she doesn't eat much. My brothers are useless to help - except to visit - wish I could just visit. My sister who is a nurse does minimal in helping out - don't know why she doesn't do more in monitoring mom's health. I mean it doesn't seem like it would be this much work when she went to AL...but it is when all the stuff that AL doesn't do falls on one person. I've been going to the AL everyday and now I feel I should pull back and not go so much. Everytime I go to the AL, Mom cannot just talk to me...she is asking me to do this or that, get her this or that. I guess I just want some recognition of what I'm doing which I don't get. But guess I'm expecting too much from everyone. Sorry to vent...but it's getting to me.
Helpful Answer (8)
Report
CaroleOR Jun 12, 2023
Would it help if you had Amazon deliveries of incontinence products? Can your mom afford a nurse to monitor the glucose level? You are burned out and need to take a step back
(4)
Report
See 2 more replies
If you don't get an average of 4 hours of sleep per night, you will have mental health problems. I learned this from a counselor, when my daughter, who has cystic fibrosis was as yet undiagnosed, at age 2. You must put your oasis of sleep-time as a top priority or everything else will go to hell. It is your job to hold-the center. Keep your structure. Use ear-plugs, and white sound. You are the center and everything should revolve around you!! Ha, easy to say. Use paper diapers for her to get through the night. Expect no improvement in her situation. I know how awful it is to feel, all these emotions. The difference with a aged person, is that you know it will never get better, unlike when you have night disturbances caused by a child
Helpful Answer (6)
Report
southernwave Jun 11, 2023
It’s 6 hours a day minimum (studies prove this) and you can get it fractionally. 6 straight hours is best, but three sessions of two hours is ok but not recommended.
(3)
Report
I have chronic insomnia. Medically, you need 6 hours a night of restful sleep or you develop health issues since your body can’t rejuvenate itself if you don’t get that many hours. My sleep doctor made me do an online Harvard CBT for sleep class and 6 hours is it. Not 4. 6 is the minimum for your body to function. You have to do something or your body is going to shut down and you might die. It’s no joke.
Helpful Answer (8)
Report
KNance72 Jun 12, 2023
I need 8 hours or my heart ❤️ gets whacky
(1)
Report
See 1 more reply
You get help-a caregiver or a home.
Helpful Answer (4)
Report

Girlfriend Do you know what Burn out Is ? you are burnt out . Hire someone from Care.com or Nextdoor neighborhood app - Ask for Help - get a social worker involved thru your primary care physician or her primary care physician or a therapist . Ask for a VNA nurse also and help getting a CNA that Medicare covers - and Meals on Wheels . You need self care . You must take care of yourself First . I am following shadowdeangelis on Instagram because Iam dealing with 3 Narcissists. Iam learning strategies to deal . Also Joan Halifax has free courses for Caregivers at the Upaya Zen center . Please get yourself a lawyer and learn about Boundaries - and get yourself some sleep and help - You are in my prayers .
Helpful Answer (3)
Report

Personally, I do not recommend Ambien. I recommend Xanax or Clonazapan or Trazadone. The reason I do not recommend Ambien is that every single person I knew who took it did strange things in their sleep. Most common was to get up in the middle of the night and eat. Some cooked odd things. One burned his arm cooking rice when he doesn't even care for rice. Another friend posted intimate details about her love life on Facebook and didn't remember doing so. Another friend did something far more dangerous. She got up early, drove to Trader Joe's, bought something, brought it home and ate it. She did not remember any of this when she got up.
Xanax if taken regularly can also work as an anti-depressant. I will take either so as not to get dependent on any one. And I skip anything altogether a few nights for the same reason.
I'm sure Ambien works great for some people and if it helps and they have no side effects, that's wonderful. I don't knock it. I just think it might be helpful for me to report experiences close friends have had.
Helpful Answer (2)
Report
KNance72 Jun 12, 2023
I saw a friend do some bizarre stuff on Ambien and told her the next day / she told me “ her dad would drive on Ambien and get up naked and cook on the stove . “ Xanax if you miss a couple doses you go thru Hellish like a Bad LSD trip
My Friend and I believe Ambien was the cause of Anthony Bourdain demise it places you in a hypnotic trance state .
(1)
Report
You have our sympathy and understanding. This is very much a place to vent.
Helpful Answer (5)
Report

" I am looking for suggestions on how to better deal with the negative feelings and how to shut everything off to get a good night's sleep every night."

I've read your previous posts, and you have an untenable situation.

As long as you won't consider placement for your mother, things probably aren't going to change.

One way to think of things is what do you think would happen to your mother if you couldn't take care of her anymore? Say you died from the stress or had an accident and became hospitalized?
Helpful Answer (9)
Report

Bless you! Do you have anyone that can assist you so that you can rest? Take it from me, you are going to have to rest. One of my friend's mother had Alzheimers. My friend had to eventually hire people ( I think 3) to come in ( in shifts) to spend the night and help. Do not be hard on yourself. But I understand because I'm hard on myself too but we are doing our best.
Helpful Answer (4)
Report

Sadly, there is no easy answer. Dementia care is 24/7, 365 days a year and it is EXHAUSTING. You are most likely experiencing " caregiver exhaustion"; or happens and is a real diagnosis even for the most loving strongest person. Do not feel guilty for your feelings; they are natural.
1. Confer with her PCP , and request a case manager ( usually a licensed social worker) to be assigned to help you navigate potential options for assistance. These may include help in home or facility placement options.
2. Get the PCP to assess your mother for an updated accurate " level of care needs ". This will tell you a lot that confirms what you are experiencing and,about helping guide care options.
3. Be sure that if you are the POA that you have correct documents for this in order to make decisions for her.
4. Consider also that a lot of dementia patients get their times mixed up and are up at night when others should be sleeping....hence then in morning they still need care and the vicious cycle for you,the caregiver continues in order to keep them " safe".
5. Consider that pilots, surgeons, train engineers and other professionals are not allowed to work after x number of hours on duty; this is for their well being as well as the safety and well being of others in their care. You and all the other " caregivers" out there are no different, except that there is no " regulation" and other person ready to step in. I share all of this to confirm you, help you not feel guilty, and to encourage you to get help perhaps by starting with one of the above suggestions. And, if memory care, facility placement is an option, do not dismiss it. Consider what would happen to your mother now if you get ill, collapse from exhaustion or worse?
Who would care for her? Who helps you now?
You might even have her assessed by a hospice of your choice to see if she is appropriate for hospice care; this would give you a broad range of professional support making decisions....
Helpful Answer (4)
Report

When I took care of my parents before they passed I downloaded a free App called “Soothing Pod” if I woke at night I used the sleep meditations. During the day I would listen to stress or relaxing ones. Plenty of free options so no need to pay for upgrade. This App helped me relax so much that at times I fell asleep in bed or in my chair before the session was complete. Also try and get some help if only a few times a week for a few hrs. If you can not find help at minimum hire someone to come in weekly or bi-monthly to clean the house. I did that when I worked and cared for my mother in law in my home years before I cared for my parents. One less chore for you and reasonably priced.
Helpful Answer (1)
Report
KNance72 Jun 12, 2023
Great answer
(1)
Report
NeedLove2,

I'm sure you have heard it all. This site is great but you already know the answer you are seeking. Find a good nursing home and place your mom. You are not happy, you have done what you can. Find your life again and put your mom somewhere she is safe and will get the care she needs.
You will still have your emotions to handle. You will still feel but in my opinion giving up your life for her life is not the answer.

Wish you all the luck in the world and I hope you find peace.
Helpful Answer (3)
Report
Dupedwife Jun 12, 2023
The OP said that her mother has too much income so she does not qualify for any help/nursing home. Perhaps her mother can do self pay in an assisted-living facility.
(3)
Report
So do I. I have even been to sleep doctors. It’s just too much stress.
Helpful Answer (5)
Report

(((((hugs)))) To me you really need a break - at least a week of respite with your mother placed for that time so you can catch up on sleep. It's very hard to problem solve when you are exhausted. It was mentioned below what happens to your mother if you break down mentally and/or physically?

Perhaps watching videos of how to cope with seniors with Alz would help. Teepa Snow is well thought of.

Have you spoken to your dr about your issues? Some meds might help you relax and get more sleep.

Wishing you all the best,
Helpful Answer (5)
Report

Go on Instagram in the middle of the night when I can’t sleep
I will watch sleep apps on repeat - Calm has green noise . The apps are great 😊
Helpful Answer (0)
Report
ConnieCaretaker Jun 12, 2023
Please look for a Mindfulness Meditation class at a hospital (Nothing religious like TM).
(0)
Report
Get Mom placed near you, for YOUR convenience. Contact Elder Law Attorney to navigate the financial systems and get a Geriatric Psychiatrist to help YOU cope with your situation and your emotional rollercoaster.
Helpful Answer (1)
Report

CBD oil helps it can be strong and not work with everyone - Happy Hemp Buddha has samples - take some after dinner . The FIVE.com CBD gummies are very strong - 1 before bedtime but I find them too strong . There are some with melatonin . Melatonin is a hormone It is ok once in a great blue moon . Ear plugs help also I use Flent - sounds like you may have PTSD because your on high alert . A lot of Caregivers get it and PTSD leads to insomnia. If you can find a community acupuncture that helps .
Helpful Answer (0)
Report
southernwave Jun 16, 2023
Yes to accpuncture! I tried it on a cruise ( 3 sessions) and I couldn’t get over how helpful it was.
(0)
Report
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter