I'm new to caregiving and trying not to drown in it.

Question

I'm a 36 year old, only child of a single mother. My mom has had two strokes this year and is now recovering at home with me. She pays the rent and, since I had to turn down a well-paying job to care for her 24/7, I am terrified about financial problems. She did not sign up for Social Security or Medicare before her stroke, so now I am trying to backtrack all of that. It is exhausting dealing with bills, endless phone calls, mountains of paperwork, and having to do it all alone because I really don't have anyone else (I have people who offer to help but those offers seem to disappear almost as quickly as they're spoken). I am an organized and efficient person but this is all a little much, and the never-ending hoops that the government makes you jump through to get anything done are ridiculous and frustrating.
Add to that, I'm really sick of being a caregiver already, and it's only been like two weeks (she was in the hospital for a week, came home for a week, went in for another week, and is now back home). I had no idea that burnout could set in this quickly or that I would be feeling the level of anger that I feel. My mom is a great person and was an amazing mother, but quite frankly as a care recipient she's a pain in the butt sometimes. She's always been stubborn and resistant to doctors and hospitals and all of that, but it's definitely been ramped up with the stroke. Tonight as I handed her her last pill of the day she literally slapped it out of my hand. I lost it a little and yelled at her, and I feel bad about it. I apologized, but it's hard to not feel like scum just the same.
I'm sick and tired to death of the gross side of things too. The bathroom/shower issues, the lack of interest in ever getting dressed or changing clothes, the poor dental hygiene and bad eating habits, I mean I'm dealing with it because I want her to be clean and healthy, but it's still gross and literally the last thing I hoped I would ever have to do. I'm tired of trying to force her to get up, having to put up with her hissy fits about basically everything, having to spend an hour coaxing her out of the house for doctor's appointments. I'm sick of the ingratitude and the childish arguing and mocking and selfishness. It is so hard sometimes to help someone who says they don't even like you. It brings out apathy in me sometimes that I'm not proud ot.
I'm tired of being trapped in this house, not being able to just go for a walk or do my yoga or drive out to a friend's house. I'm sick of having to arrange my entire life around her sleep schedule, and feeling like I'm herding cats when I'm trying to get her out the door in any kind of timely fashion.
I'm also just brimming with resentment. No one deserves a stroke or any other health condition, but my mom hasn't had a GP since I was born in 1984, she smoked for decades and chugged Pepsi all day and never exercised and ate an atrociously bad diet, and now I feel like I'm being punished for her bad decisions. I am certainly not the poster child for good health, but at least I take my meds and go to my doctor's appointments and I try to get exercise and eat a healthy diet. Mom never even tried, despite decades of myself and other family members encouraging her to do so.
The worst part about this is that I know I'm in for a long haul because she's only 65 and she will never go to a nursing home. And the thing is I wouldn't want her to, because in the moments that she has clarity I want her to feel safe and in familiar surroundings, at home with me.
So in summation I am trying to do my best for the woman who raised me on her own, who was a great mom and who I would definitely be turning to for help right now if she weren't the one who was sick. I'm trying to not feel crushing guilt, crippling anger and overwhelming stress. I'm trying to not feel like the worst daughter in the world.

Scampie1 · Accepted Answer

All that you've written here describes caregiver burnout and lack of self-care. I know that you love your mom, but what we as caregivers have to keep up front is who will take care of us?

Turning down a well paying job is not the way to go. You will need a job to pay taxes so when it is time for you to retire, you will have enough money in the system to get Medicare. Caregiving is hard on one person. Please check into home care agencies. You can do private pay. Your mom can pay for her own care or either get her set up with medicaid so that she can get home health care in the home.

Get a job. Get self-focused again and develop a life of your own outside of caregiving. There are some pretty good caregivers out there. If all else fails, get respite for a few days.

Tenacity · Answer

I'm sorry this is where you find yourself. And you are human, you have needs and feelings, too. I hope you get the support and the wisdom here that can help you remember to be kind to yourself.

Has anyone suggested that you might be grieving? That you're grieving for the life you once had. Grieving for the simple things, the freedom to do things like take a walk.

If this resonates with you, perhaps you could write about how you're feeling. Do it in a journal where no one needs see it but you. Don't edit yourself, just write whatever comes to mind. You may find unburdening yourself this way to be helpful. I've also found a few minutes in the shower, crying as the water streams over me, to be therapeutic.

NinjaWarrior3 · Answer

I hate to say it, but you will feel crushing guilt, resentment, and anger. It just goes with the territory. I think that we all feel it, as caregivers.

The only thing you can do is start planning now. You have to decide. If you are planning to keep her at home, you HAVE to try to get some sort of home helper, or else you will totally burn out. This period will last for a LOOONG time. Some people are caregivers for 20 years!

Or, you will have to find a care home. No one wants to place their loved one, but sometimes it has to be done.

So, be sure to get POA, get an Alzheimer's clock, an ID bracelet, and a room camera.

And, join the Alzheimer's Dementia Caregiver's FB Support Group. You can vent there without judgment.

BabyBrooksK · Answer

May I ask what is wrong with your mother?  I think maybe you need to look at homes for her and believe me it's not easy but you need a life also.  I had to put my dad in a nursing home because I was the only one my dad has. It's not that you can't do it, it's just it will get worst.

CaroB123 · Answer

You have such a full plate.    I, too am a caregiver to a somewhat obstinate, sometimes crabby 88 year old amputee diabetic with early signs of dementia.  I certainly get where you can be frustrated and bitter and tired and angry.  Maintaining your own sanity might require the move to the nursing home for her.  At some point in time that won't seem like such a negative choice.

PeggySue2020 · Answer

After my FIL had his stroke, he was eligible for a month's worth of care in a HOSPITAL rehab. You got that right, one that was part of an actual hospital.

He left as soon as possible to go HOME. FAMILY. PETS.

OK, well now it's a year later and he can't do anything that he probably would have learned at the stroke places. He is now more infirm as a result.

ToniFromRVA · Answer

You needn't feel obligated to take care of your mom especially if it's so overwhelming & you can't live your life. Contact your local Center of Aging to help you with applications for health coverage, etc. They can advise you both about available living alternatives or help with ADL's etc. so that you're not caring for her 24/7. Start looking for respite from family, her friends, etc. If she goes in the hospital again, speak with the discharge planning person about her need for help and possible placement if she can't be managed at home. Once help is in sight, start applying for jobs so that you can start living your life again.

peace4all · Answer

I did not get to read all the posts but I think the pacifist was spot on in your situation. Hindsight is always best. Placed in a care facility your mom would get the best from you - and look forward to seeing you - and you would get the best from your Mom. I am so sorry you quit your job. I take care of my Mom full time but I had enough years in to retire with a comfortable income. My Mom has dementia and requires almost full time care but I have my brother who always helps out and is very cognizant of what my Mom needs. What you are doing is just. too. much. for. one. person. My Aunt is my support person (she lives in Florida) took care of her husband until she had to place him in nursing home. He died from Alz and diabetes. While he was in the NH, she went at lunch time to make sure he ate and then at dinner time. She never missed a day. She also went to support groups and learned a lot. She tells me every time I talk with her - Number One:  Never feel bad or guilty about losing your patience or temper or what you say or yell.  Number Two: You are doing the hardest job in the world. Number Three:  You are doing more than what most people would do. Number Four:  No one else has ANY idea how hard it is - unless they have done it too. I really know how you feel about taking care of your Mom and not putting her in a nursing home but you really do need to think/consider about prioritizing some of your needs ahead of hers - such as working and having enough to live on and for retirement. I did therapy via zoom (or something like that) with a therapist that is near-by so I could see her in person some day and I highly recommend you do the same. I am really concerned that this is going to destroy you/your life the way it is right now. I really am. I also had a thought that maybe an attorney could get the medicare, etc. in place instead of you doing it. At least if attornies do this you could get a price and see if it is feasible. I pray you will be able to change your situation and make it at least some better for you. Prayers and good thoughts for you.

Beethoven13 · Answer

Someone else mentioned the home health aide agencies.  I got a recommendation from the SW or CM at the hospital from mum's last admission.  I went with Visiting Angels because they had a local office in my parents town and when I called, a real live person answered the phone.  When I left a VM, a real live person, the same one, multiple times, called me back.  They have have been great.  Yes, we got very lucky with an excellent aide who had capacity to take us on as a regular.    If this is what you want, make this known from the beginning with the agency.   We have 3 times per week aide, the same one every time, for 3 hours a day.  She mops the high use areas, cleans the bathroom, heats the food and makes sandwiches for supper, washes the dishes and does the laundry, takes out trash,  and provides them with some outside company and conversation.  It is working out very well.   She will go buy groceries if needed or pick up take away food too.   The cost is less than $30/hr and if your mother has funds, it is money well spent.  You have to be involved at first.  I was in the home when they started, I wrote out check lists, bought the cleaning supplies and stocked the bathroom and kitchen etc.  But, once you get a reliable aide with common sense and some experience,  after a couple of weeks of check lists, its smooth sailing.  I would Highly recommend them.   But do be there when the aides first start coming so you can show them what is expected, where things are, and give them the low down on the parent - the good, the bad, and what you really need and expect.  So they are not doing things you dont value and you are not always looking over their shoulder.   Every day won't be perfect, a couple times I found the trash was not taken out or the cat box was not scooped but 90% of the time, its been great.    We had only one who just came in, sat on the sofa and played on her phone while my dad watched TV and talked to himself.  (I walked in on this,)    But she was just a fill in for one day.  The regular aides have been great and if/when they can't show, the agency calls me direct and they will staff it with someone if at all possible.   And, as needs increase,  we can increase the coverage so they can stay in their home as long as possible.   And, if the aide cancels or quits the agency finds a replacement to staff your needs. No hassle for you.

Countrymouse · Answer

So, because she was a great mother and you love her (still do love her) very very dearly...

That makes you trained in care provision for a stroke survivor, does it? Up to speed on all aspects of physical and mental health impacts, skilled in managing the physical needs, able to find workarounds for all the challenges? Suddenly able to work 24/7 with no respite?

If there's one key problem, it's having completely unreasonable expectations of yourself. What support if any are you getting with this?

hearterg · Answer

First get someone in there a couple of hours a day so she can get used to someone else taking care of her then start looking for a day program so you can take your job and pay you for your own rent and make her pay for the program or pay for someone to come in and take care of her, it will give you time away from her and maybe she will appreciate you. If you are unable to do that financially then you have to figure out a way to get things done that makes her feel like it's her choice, it's kind of a manipulation but the more you do it the easier it becomes. Build a routine,  write everything on a big calendar.  Have the Doctor tell her what she has to do so she can't hold it against you.  It may be a good idea to get an elderly attorney in your area,  they would know the local ins and outs and may be able to get your mother I'm a Medicaid or Medicare.

Christservant · Answer

Ha, ha, lady what you are describing is what I think 98% of us caregivers go through.

Well, you came to the right place because we will offer you as much support as we can.

To begin with may I suggest you get in contact with focus on the family ( check out their web site, yes it is Christian and has a lot of helpful recourses there and you can talk with a councilor for free)

Next, may I suggest you contact the local Salvation Army. They are another one loaded with great recourses.

After that may I suggest you contact the local Alzheimer's society. There are another one which will offer great help.

The one bonus for you is you do not have free loading relatives which makes the job all the more difficult.

Oh, and as for the emotional hell you are going through, may I suggest you go to the best councilor there is. His name is Jesus Christ. He is just a prayer away. Although this may sound corny it is not. He is real. He loves you, He cares about you. Everything you are going through, He has gone through so He does offer the best help.

I know because He is the best councilor I have gone to through extremely difficult times for the last forty years.

Llamalover47 · Answer

Rosewater:  Imho, you require respite through any means possible, Visiting Angels and others, else you will fall faint and ill and be good to no one, let alone be a caregiver to your mother.

Beethoven13 · Answer

stop beating yourself up.  See if she can get some home health care PT for a few weeks.  They are not sitters and only come for an hour,  2-3 times per week for a few weeks but it might improve her mobility in the home.  Decrease caregiver burden.  Use that phrase.   Especially Since she had a stroke.   Call the case manager at the hospital she discharged from.  or Social Worker.  They should have asked about needs in the home before she discharge.  Never be shy,  always take the help when its offered.  She has to have some sort of coverage, insurance, or forget about it. for self pay,  I would hire a sitter or someone to give yourself some free time.  See if your community has Meals on Wheels.  They will deliver one healthy meal per day, weekdays.   Have some sandwiches made in fridge for a light supper with a can of soup for something warm. Small ice cream for dessert.   Breakfast is Cheerios and a banana and a hardboiled egg and toast.   You can go a long way on this routine.    If she is still smoking, stop that immediately.  get her a nicotine patch if she has cravings.  Stop the sugared soda immediately and get club soda or zero calorie soda options.  It all costs the same, get the healthy stuff.   Give her the routine,  baths in am or pm, change of clothes MWF or whatever.  Change the sheets and towels on a routine.  Thats the rules and that's what's happening.  Dont argue and dont bargain and dont threaten.  Just say what's happening and do it.  You can control pretty much everything in her world, use it to your advantage.  Sit her in front of the TV for 30 min and take a walk, take a shower or bath, or do yoga.  Don't feel guilty about any of it.  Placement is the next option as others have already said.   Look into it so you have your ducks in a row if needed.   You can visit.    A big hug and good luck.  I am walking a similar path.

underestimated · Answer

You need an eldercare lawyer to help protect finances, your local or state agency on aging to guide you in general, and prayers and support from this group. Listen and learn from our experience.  You can't keep your mom out of a nursing home if you end up there first! My screen name is Underestimated. That's not because of how I feel about how I'm viewed, it's because I COMPLETELY underestimated how all-consuming being a parent's caregiver would be. Newcomers to our club underestimate the toll it will take on one's health, future, relationship with the loved one, social skills, finances, and even self-image.  We wouldn't find it acceptable if our parent were being cared for by just one person in a hospital or home. Someone with no medical training, in less than good health, poor sleep habits, etc, etc.  I certainly don't have all the answers, but I do have admiration for your willingness to try.  Prayers

ibomifl4862 · Answer

You are being such a good daughter and you're not a bad person. I think I would feel anger and resentment too if I had all of this placed on my shoulders like you have had. Caregiving often involves appointments, making the bed, cleaning up messes, and having to watch the person often during the day. I'm sorry you're having to deal with this. It sounds like she is rather toxic and seems to resent the fact that you're having to take care of her. I think I would place her in the best care facility that you can afford or get part time in home help.

Riley2166 · Answer

First I want  to say, I agree with you - not everyone is cut out to be a caretaker and if they are not, and can't find people to step in, then the person must be placed. She lived her life and now it is your time.  She not be home  with you given the level of responsibility and never give up your job which is part of your future.  I too would rebel and could not handle th toilet issues.  You need to think of you and  your welfare and future.  Please place her at once.  She may be great but I don't think she did anything to look after herself.  She made her bed so she must lie in it.

katepaints · Answer

You are not the world’s worst daughter! You are experiencing the unexpected and massive weight that can come with caregiving. You’ve been cut off from your life as you knew it! You cannot do this alone. You can’t fix the problems that have resulted from her poor judgment and lack of care for her health.

Consider the big picture. Your finances will be a wreck if you’re not working. You can’t keep this up. Your mental and physical health will really suffer. Her care will become more demanding and you simply won’t be able to keep up with it. What would happen to her if you became too ill to take care of her?

Contact your Area Agency on Aging. They will have a lot of options and ideas about caring for your mom, including how to get in home care for her. Red tape in applying for Social Security, etc simply is and you can’t escape it. Once it’s done life will be better. It’s overwhelming because it’s crazy making and you’re drowning in so many other tasks and emotions as a caregiver for someone who is angry and difficult.

Never say never about a nursing home. Don’t bring it up at this point. If it comes to it, search through Medicare website to find the very best one you can. Visit her a lot. When a facility knows family comes a lot and is involved, the care can be better because they know there’s another set of eyes on the loved one.

If you don’t have it already, do get Power of Attorney. Your life will be so much easier. You’ll be so glad you did when dealing with doctors, etc. The way I put it to my brother was “You know how I’m doing all this stuff for you? I need you to sign this giving me permission to take care of this for you in case someone asks”.

Don’t sacrifice yourself by doing it alone.

wonolancet · Answer

Do not try to cope with everything at once. Believe it or not things tend to work out. I would suggest a support group of folks in your situation. My husband has Dementia and no way is he going to a nursing home. I am happy to care for him. Keep your Mom busy with activities she can handle. I give my husband chores to do and he does quite well. Do not take to heart things she says or does because she lives in another reality. My husband calls me the she in the next room, lol Gets pretty comical sometimes. Are there any agencies in your area that could come in and do some home care if you can afford it. Do you have an adult daycare in your area she could go a couple of days a week. Is there anyone in your family who could give some time so you could get out. Wishing you the best and you are not the worst daughter at all. Dealing with these situations tests our patience and fortitude.xoxoxox Sending a "big" hug!!!

bicycletoo · Answer

Get someone to assist you to allow yourself regular breaks from caregiving. I had a healthcare provider background, so was prepared for the physical care, finding excellent medical specialists for my mom, but was not prepared for the emotional and psychological toll that can eventually wreck your own health.  I took on the task by myself for 3 years, neglecting my own healthcare checks except for exercise and a decent vegetarian diet.  I ended up being hospitalized with extremely high blood pressure, carotid stenosis, was allergic to the antihypertensive prescribed and had rhabdomyolysis.  My brother took over when I was ill, changed the POA without informing me, so it is now all his responsibility.  I was exhausted and no one cared, because I had not prioritized my own health.  Don't let this happen to you, you have to take care of yourself first, sounds cliche but is the absolute truth.

Armani1820 · Answer

I believe every caregiver has felt all of the emotions that you mentioned. I'm 39 and like you, I was extremely overwhelmed in the beginning of my caregiving journey. My mom passed last month and the finality of her being gone is a tough adjustment; but, I would have continued my sacrifice just to have her here. I don't know if you believe in something higher than yourself, but I advise that you pray and turn to the word whenever you are feeling stressed, resentful, angry, etc etc. I also advise trying to seek counseling/therapy to help with coping mechanisms while this journey lasts. I had no counsel in the beginning and I was my only help. I cared for my mom from roughly 18-39 years of age and that story in itself is something made for a movie which I won't divulge right now, as I'm trying to be brief. In addition to what most of your supporters have mentioned regarding seeking someone to give u a break every week or so if it's financially possible, or applying for Medicaid so she can have home health aides with her during the day while you tend to your needs, you must also focus on your health and well being. We are consumed when caring for our loved ones, that we tend to neglect ourselves. I have had way too much experience with hospitals, rehab facilities, etc etc. The healthcare system is broken and changes must be made. If your parent requires 24/7 care and help, the countless facilities I have experienced will cause a decline in their health. Thank God for his blessings over my strength and patience, as I was there from sun up to sundown once I realized the care given is not present, so I was pretty much an unpaid worker whenever she was hospitalized or in a facility. Places lack the number of staff needed to help, and nurses are overwhelmed with too many patients, and when you witness this for over 2 decades, it's heartbreaking and the quality of care is nonexistent. If ever you need to talk about the nitty gritty when it pertains to ALL THINGS related to caregiving, please reach out. I tended to all my mom's countless needs and as time progressed more issues arose, so I was in charge of medication administration, feeding tube care, tracheostomy care, you name it....I was even taught how to give her antibiotics via her pic line at home. I have learned so much that I would not mind sharing with you or anyone else for that matter. Please pray and try your best to love her through her illness. Once you alter your frame of mind, how you respond when she is troublesome will change. This will take time but believe it to be possible.

Dizzerth · Answer

I took care of my dad who had dementia and my husband who had a brain tumor as well as my mom who had COPD and many bouts with pneumonia etc. The most important thing I found was to reach out for help wherever it was available. Particularly with my dad since he could never be left alone. I contacted my state agency that deals with aging and got hooked up with respite care and other resources. They may have counselors who can help you with the paperwork too. I also got help through my church with an extra caregiver so I’d have more respite time. I had a camera on my dad at all times so I could monitor him with my phone. When he was safely tucked into bed each night I’d go out for a walk with my dog. I found respite care, counseling and exercise to be the 3 things that helped me the most. Also I tried to cherish any good things that happened since I knew I’d be saying goodbye before long to each one I cared for during their illness. Hang in there. Above all, get counseling of every kind and some space for alone time for yourself. You may find out you can’t do it and will have to place your mom in a home. Counselors could help you with that determination as well.

KattiP · Answer

What a great thread. This has been a very valuable discussion for me as I'm sure for the original poster. My Mom is turning the corner on being 88 and just beginning to exhibit some memory issues and has incontinence issues. She's in excellent health otherwise. I've gotten her health POA, and permissions to discuss her care with her GP, Medicare, etc. She agreed to do this so that I wouldn't have to deal with all that should she get sick. She lives by herself in a house built by her and my Dad. I moved long distance to live near her 6 years ago when my Dad passed away. My husband and I do lots of little things for her and we're happy to do it, however, she's beginning to let the house fall into disrepair. I had to have a talk with her to let her know that if she wanted to stay in her house, she would need to get things fixed. She is financially well off, so money is not the issue. I think she gets overwhelmed when there are too many things to take care of, so she just ignores some things. I found a handyman to begin repairing and replacing some of the important things like getting one of her door locks replaced because it was broken. She reasons things away like this by saying she lives in a gated community and no one would be able to get in. Ugh! Her front door locks were oxidized and the key would no longer work so those are being replaced too. When I tried recently to get her to have other things fixed she said it was too much too fast. Big argument there so I let it go. I'm going to try again after Thanksgiving. Her memory issues worsened over the summer. It comes and goes. We live in an area where people live here 6 months out of the year (we call them snowbirds). Her friends are returning and she's as happy as a clam. She's been hacked three times and I worry that it's only a matter of time before it happens again and harm is done. (thankfully I caught all three in progress and averted the worst).
Problems with long and short-term memory:
1. forgetting that's she's already asked the a question just 5 minutes later, repeats herself. Seems to come and go.
2.Often reintroduces me to those I've known for several years.
3.Showed up a day early to pick up friends for dinner, another day an hour early.
4. Forgets that she's ordered something online or orders an excess of items.
5. Has several piles of mail around the house.
6. Can't keep up with her emails (I have access to that and clean out the spam for her)
7. It's hard for her to make phone calls for things that need taken care of or fixed. Gets confused as to who's who with vendors.
8. She has items that should have been returned a year ago sitting on her desk.

The list goes on and on. I try hard to help her with all of it but she's resistant and stubborn. The caregiving has barely begun and I'm already frustrated and angry. Thank you all for the advice! I want to be her daughter, the sweet one that she talks about.

Jaxon2020 · Answer

I'm so sorry for what you're going through. I'm an only child who is 52 and my mom is 84. I'm at an age where I absolutely can't quit my job to take care of anyone. My retirement would be ruined. My mom was driving me crazy and I didn't even live with her. She also has a strong personality and refuses everything like a toddler.

I recently put her into a memory care facility. Not every facility is perfect, but a lot of these places don't look like the traditional nursing home. My mom has her own apartment and the place looks like a hotel. I would try visiting a few places to get a feel for them yourself. My mom would still prefer to be in her own home, but I have peace of mind knowing that she is safe. I felt really guilty for about a month, but it really is better for both of us. Even some of her friends have visited and they can see that she hasn't been dumped in some awful place.

I've likened caring for my mom to being a lifeguard trying to save someone. You can't fight the person coming to your rescue lest you both drown.

Debstarr53 · Answer

This isn't good for either one of you. You will lose your mind and your own health if you stick to the idea of not putting her in a nursing home. My mom is still able to live on her own, and my sister and I alternate days going over to help her, but I manage all of her bills, medications and Dr. appointments. When the time comes for her to move out of her home because she cannot live alone anymore, she will NOT come home with either one of us. It will be some sort of memory care or nursing home. I know she won't like it, but she will adapt.
Your mother would adapt too, but you are NEVER going to adapt to this level of care. The next time she goes into the hospital, refuse to bring her home. The hospital will have a social worker you can talk to. They will then fast-track getting you the help you need for placement.
Read the horror stories here of how this ruined other people who took this on and could not do it without a serious toll.
You have it much worse than I do right now, and I can so wholeheartedly understand your frustration and guilt. It will only get worse if you continue down this track. In the meantime, get help anywhere you can.

KNance72 · Answer

Welcome to the world of caregiving . Get a social worker involved , visiting nurse , elder services , house cleaner , social services , meals on wheels . Make time for yourself such as a walk or manicure . Join a support group . Breathe

nymima · Answer

You are literally taking over your Mom’s life.  This is what I did for 10 yrs with my mom.  She was 85 yrs old when she came here to live in a home just 2 doors away from me.  She just gave me the power to take over all her finances and keep the orderly running of her home.  It was the hardest thing I ever had to do.  She was up and down in her health and my life became doctor visits, taking her out to places she would enjoy, and food shopping for her.  I lost my own life completely.  If the electric went out during a storm, I worried.  If we had a blizzard and couldn’t get out, I worried.  Every minute of every day was thinking about her, her bills that needed to be paid, her medication refills, her congestive heart failure problems, her growing breast cancer, her taking a shower, just everything that a person needs in order to live comfortably.  She was able to do so because I gave up everything for her.  And I did resent her.  She would not have done that for me.  Now that she is passed - at age 95 (this past summer), I feel relieved, but I am still stuck.  I urge you to think about a facility that can care for her at her level of care.  This is a situation that will eat you alive.  I developed Non- Hodgkin’s lymphoma 5 yrs into my caretaking and I know it was due to stress the first years of caring for her.  I am still treating.  I don’t know how long I have as I am stage 3b and there are only 4 stages.   My body could not take the stress of actually taking over someone else’s life.  I kept a diary of sorts for the first few years and when I read back on it, I don’t know how I did it.  It was a terrible time for me.  My mother had it good, but I did not.  Please consider doing the next best thing and do not feel guilty.  You deserve your life and she will have hers.  She may not like it in the beginning, but don’t let that sway you.  You will be fine and she will even have friends, meals, showers, etc.  in her new home.  And you can visit her and be her daughter again.  Do it.  You will not last if you don’t.

BrendaJayi · Answer

All your anger, overwhelm, exhaustion are totally normal and understandable. Mother Teresa would have trouble handling the frustration. And there are people who did everything right for their health and still end up with dementia and multiple physical problems. We do not know the causes of so many diseases.

I would suggest finding a geriatric psychiatrist. They are very hard to locate - but well worth it. They can offer medications that ameliorate many of the behaviors you describe. The behaviors you describe are intolerable for anyone - it is not a case of your lack of patience or love.

You are finding this hard because it is the hardest job anyone will ever do. Medicare should cover an aid 3 times a week to help with bathing and dressing. They should also cover a social worker to come to your house and let you know what services are available in your area.

I am so sorry you are going through this nightmare at such a young age. It will pass. The workforce you left will take you back. The patience, creative problem solving, organizational skills, communication and task completion skills you are honing now will enhance your value to an employer.

Best of luck to you.

Taarna · Answer

Might I make a few observations and suggestions.

1 - Your mom's care will be overwhelming if you are the only person caring for her 24/7/365. Burnout is inevitable if you do not get enough "time off" to meet your own health needs and social needs.

2 - While I admire your dedication to your mom and her care, you are neglecting your own retirement. You need to secure your own financial state first and being with mom second. Nobody can secure your finances or retirement but you.

3 - Everything seems overwhelming. You need to sort out the issues and create a plan. Meeting with a social worker and a counsellor - even televideo meetings can help. The social worker can help you locate and access all the resources available for your situation. A counsellor can help you sort out the emotional overload and create a healthy plan for dealing with your mom.

4 - There are lots of ways that you can work, get enough time off, and help care for mom. You can not care for her 24/7/365 alone.
a - Ask for help from family, friends, community of faith, and paid help. Some folks will be OK with sitting your mom for a few hours weekly. Others may be able to help with household tasks: housekeeping, meals, yardwork, running errands...
b - if you can not get enough help to care for mom at home, then it is time to look at outside resources. Adult Day Care is a Monday through Friday daytime option; they care for mom in a nursing home of private home while you work. Home health aides can also watch mom in your home while you work. Assisted living usually consists of having a private room or suite with home health aides that assist throughout the day. Full care is for those that need frequent care by others. Check to see if mom's insurance and finances will cover any of these services.
c - If mom doesn't have enough finances, help her apply for Medicaid. Help her also apply for Medicare and any other public help. You can make an appointment with Social Service. It might help to review their websites and gather all documents needed. If your mom ends up in the hospital again, ask social services to help you with these tasks.
d - If mom needs to use Medicaid for help, she may be best served in a residential facility that takes Medicaid clients.

A good daughter or son makes sure that their parents are cared for... even if it means you can not do the hands-on care yourself.

thepacifist · Answer

Oh goodness. I saw this in my email inbox, and I knew that I had to come by and say something. My mom passed away last year. I am 39 years old. And I took care of my mom for 13 years. My mom was 75, much older than your mom, but I took care of her from age 25-38. After my dad passed away, I was her caregiver.

Listen sweetie. I said the same things as you, about how I would never put her in a nursing home and how she didn't want to go anyway.

I miss my mom so much. I burst out crying yesterday because a memory came to me so vividly about her. But, there is so much CLARITY now that she is gone. I love her to pieces, but she would have been so much better off if at the age of 25, I put her in assistant living. Because at the time, she was at least able to walk with a walker and in the beginning, I only did things like laundry and cooking, and standby assistance for showers. Gradually, she got worse, took a few falls, messed up her back. Became bedridden during the last 6 years of her life.

I was her ONLY caregiver. She did have CNAs coming to bathe her 3 times a week, which was helpful, but even with that it was a burden. (Ask the doctor to order you this, if she has Medicare, she should be able to get CNAs to come bathe her). My mom was a fiery woman, used to be very independent and always got her way. Very sweet, though. She wasn't horrible, I'm just saying, she was a woman that knew what she wanted. It was... HARD. My brothers off in other states with their family. We had no family here. It was just me. I managed bills, her pills, her dressing, Hoyer Lifts, taking her to doctors appointments, her dentures, her voiding and bowel movements. The whole nine.

I still sometimes here a sound (probably my neighbors) that makes me think its her, and I have an urge to jump up and run to see if she needs help. The PTSD-like crap will get to you. I don't even know if it's PTSD. It's something.

Look. I joined a gym and MADE time for myself when I was taking care of my mom. You have to. You HAVE to go on a walk or do yoga. You matter, too.

But anyway.... I was saying before... that I have such clarity now. I would have done everything differently. And one thing that I learned... no matter how much your mom says she doesn't want to go to a nursing home, the fact is, she's just scared. Deep down, any sensible human would choose a nursing home over putting burden on someone they love. But she isn't sensible. She's knocking pills out of your hand and she has had strokes. She's sick. So she can't think logically about the matter, but you can.

You'd be able to visit your mom in a nursing home, even take her out shopping or out to lunch sometimes, come by and visit her and tell her about a new guy or job in your life. About your new yoga class. Have photos for her to look at. Grandkids for her to visit with. All these things, I wish I could have done with my mom, but can't, because I never gave myself a life.

You need to take care of yourself.

I'm new to caregiving and trying not to drown in it.

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