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

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

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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.

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K katepaints Nov 2021 · Answer 1 · 2021-11-18T15:23:08.000-0500

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.

R Riley2166 Nov 2021 · Answer 2 · 2021-11-18T18:58:07.000-0500

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.

I ibomifl4862 Nov 2021 · Answer 3 · 2021-11-18T19:03:50.000-0500

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.

U underestimated Nov 2021 · Answer 4 · 2021-11-18T19:04:32.000-0500

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

B Beethoven13 Nov 2021 · Answer 5 · 2021-11-18T20:14:22.000-0500

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.

L Llamalover47 Nov 2021 · Answer 6 · 2021-11-18T21:53:34.000-0500

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.

C Christservant Nov 2021 · Answer 7 · 2021-11-19T12:28:30.000-0500

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.

H hearterg Nov 2021 · Answer 8 · 2021-11-19T14:39:03.000-0500

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.

C Countrymouse Nov 2021 · Answer 9 · 2021-11-19T14:50:18.000-0500

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?

B Beethoven13 Nov 2021 · Answer 10 · 2021-11-19T19:39:35.000-0500

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.

P peace4all Nov 2021 · Answer 11 · 2021-11-19T20:07:13.000-0500

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.

T ToniFromRVA Nov 2021 · Answer 12 · 2021-11-19T21:27:46.000-0500

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.

P PeggySue2020 Nov 2021 · Answer 13 · 2021-11-19T21:54:13.000-0500

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.

C CaroB123 Nov 2021 · Answer 14 · 2021-11-19T23:37:53.000-0500

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.

B BabyBrooksK Nov 2021 · Answer 15 · 2021-11-22T14:15:00.000-0500

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.

N NinjaWarrior3 Nov 2021 · Answer 16 · 2021-11-22T21:50:17.000-0500

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.

T Tenacity Nov 2021 · Answer 17 · 2021-11-23T22:45:45.000-0500

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.

S Scampie1 Dec 2021 · Answer 18 · 2021-12-24T15:01:21.000-0500

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.

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

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