I’m an only child caring for my mother who recently had a stroke. Feeling guilty that I sometimes get upset with her. Please no judgement. Any advice?

Start with the reality that she is who she is. She has some blank areas in her brain that don't work... so it will take time to help her re-train her brain to compensate. Sometimes that retraining will not bear fruit. Let go of whatever expectations you have of her getting back to pre-stroke function. Enjoy and deal with what is her current level of functioning now - as if this will be forever.

Get some help so you can get some free time - daily - and bigger chunks of time off weekly/monthly.

You are not awful! You're working so hard, and doing it alone. Which makes it harder. I'm kinda new at this myself (mom's only been here about three months) and she had been living alone... so I am the child who got to discover she is sundowning, :/ We're all scatterbrains and have always repeated ourselves in the whole family so that sort of thing was absolutely not noticed. Now though, it is a superpower. I just repeat myself, endlessly, as many times as I want to.

I have printed out a picture of the remote control(s), and leave it on her tray. Did anyone teach you / advise you about having the tray of useful things? I remember when I first saw it and it broke my heart -- this is when I was looking for a tray for next to my mom's chair here *before* I even realised she was starting to slip a little. Now it's like "Oh. Well okay so this works for a lot of folks?"

Another important thing to point out about strokes is that its possible that all of the knowhow was erased - the knowledge, and the experience. Anything she doesn't know how to do, imagine she is learning for the absolute first time. "Reminding" might not help if that area of the brain was permanently cut off / broken. She will need to relearn from scratch. Hubby had a stroke in 2020, and it is still frustrating to him. He can't understand how sometimes he STILL puts a shirt on backwards by accident, until I remind him that this isn't just re-learning to put that shirt on right just one more time, but re-building the practice to put it on right every time.

Big hugs. You're not awful. You love her, and she is your world. You're doing all that a human can do and probably more.

Is there any home occupational therapy available? They send ppl out for my husband but he was already at such a good place post his inpatient rehab that they didn't stay long -- but he's young, which apparently helps? But her insurance may cover some in home rehab, which can give you a few more hours to yourself hopefully <3

I have one brother who does nothing to help . So don’t feel like you’re alone or missing something. Try to find an at home caregiver you feel comfortable with & that you trust. She can give you a break & especially during day you can concentrate on your paying job. Losing patience is something we all do. I’m guilty of it too. My 95 year old mother has dementia & she could ask 10 times same thing. That don’t bother me as much as having to wipe poop 💩 from her behind. She also don’t walk & needs to be transferred via lift machine to wheelchair & commode. She also gets very combative. In addition she has these nonstop talking/yelling with dead people. She can go for 24 hours nonstop & if I increase her meds , there’s no improvement!!! I have to wear earplugs & play music 🎶 to try & drown out her noises. I’ll take repeating things in a minute in exchange.
Good luck & Hugs 🤗

Vent here. We know what you're going through.

Schedule some extra help if you can afford it, and if not, call the Area Agency on Aging and see if they can offer some suggestions.

You're not an awful daughter AT ALL. You're grieving for and with her. If you can find even a few minutes a day to meditate, I find it helpful. I just google "10 minute meditation for relaxation" or however much time I have.

Hang in there, sweetie.

Reach out to a local social worker and ask for referrals and help. You are doing a lot, and there may be programs to help you, providing in-home caregivers that can do some of the work and give you breaks, referrals to counseling for you, etc. If you have a trusted counselor, reach out and tell them what you said here. Please, don't try to be a superwoman! You'll need breaks and time for youself to recharge. Also keep reminding yourself that your mother can't help it. Her mind is not what it was prior to the stroke. I saw this happen even with a younger person. It's painful to see. She might get better in time, but maybe not. People tend to decline as they age. You need to have a plan if the time comes when you are not able to do this on your own. Speak to the social worker and other senior care advisors about her and your options. All the best to you both.

You need breaks. You will feel much better.

Your mother will likely recover further over the six months following her stroke. (That is what I was told when my dad had his severe stroke). Sometimes it isn’t gradual, but improvement seems to happen all at once. Therapy is important. Speech, Physical, Occupational. Get her whatever insurance/Medicare will allow. In-person is more effective. Once that runs out, continue on your own or through help. If she doesn’t seem to be improving keep it up —at least through the 6 month window.

After my dad’s stroke, I attended all his therapy sessions and would repeat the lessons later. Wii sports, checkers, puzzles, conversations, walking, reading aloud… all this helped. You may not be able to attend, but reinforcing what she worked on does help her return to her best abilities and best life. Getting her as much therapy as coverage allows will possibly give you a break if you don’t have to be there. .

You have hit your limitations, so if you can afford to, outsource some of this, so you can have some downtime.

”Cherry pick” the activities you like best and outsource the others. If you hate games, hire someone to come in and play cards. If you dislike the gym, hire a personal trainer or a CNA (depending on her abilities) to spot her on a walk or a piece of equipment at home. Physical activity of any level, fresh air and different environments will all help, but bring someone in because you can’t do it all.

I took care of my parents simultaneously. Sometimes their care kept me up most the night. My dad had a debilitating stroke (and a nice recovery).. I hired a CNA to help my dad in the mornings (workout, shower and breakfast) so I could get my kids to school). They played checkers while I was working sometimes.

Don’t hire someone to help with your favorite activities or you will feel like you are missing out.

Do you have a friend in a similar situation? One of you can take your mothers out to lunch together while the other has a break. I found when my parents interacted with peers their spirits lifted. If you don’t know anyone else who is similarly situated ask around. There are people around you going through this. Your mom’s doctor may be able to help you connect.

Don’t lament about being an only child. I have 5 siblings who were mostly “no shows.” Once a sibling cared for my mom for a week while I went away with my young family for a needed break. When I returned, my Mom asked me to never make that arrangement again. My sibling was so “angry” she would barely speak to me. To this day-7 years later-, I still don’t know why she is (still) mad.

The next time I needed to go away, I hired a CNA and Mom had a great time.

I replaced my siblings with friends (a total upgrade!!)

my wife has recently become disabled. And has had some medical issues. I was always on her case to stop milking the situation and do some exercise. She needed to go to the doctor about a bad rash she had. While at the doctor they tested her and tells us she has dementia. That news change my whole attitude. I am more understanding and no longer upset. The problem was not with her but me and my viewpoint with respect to what she would say. We no longer argue.

Summergirl: Imho, you may not be able to do it all on your own. Seek respite through any means possible.

It's a bumpy road. When I would get stressed, I'd go to another room and say what I had to say and then return to my mom. I called it 'cussin in the kitchen'. If an outsider could have seen, it would have appeared that I lost my mind talking to no one in another room. It did help to let the steam go.

If there is money available, hire some help to help YOU as you help her. Definitely pay for things she can afford now. You need the breaks and she does too.

I knew my aggravation was not her fault and I did not want to say things that would show frustration, so this worked for me. Hardest job I ever had, but in the end I wouldn't have done things any differently. She was happy being in her own house and I was able to give her 7 years of my time to keep her happy. I owed my mama that much. She would never have thrived in a facility setting and from what I saw of facility care, my heart would never allowed me to put her in a facility. I was retired and able to do it, thank the Good Lord.

So I've done what you're doing now for my mother after she had a stroke. Looking back now that I'm not sleep deprived and worn out after working 24/7, it's important to take breaks for yourself and to take care of yourself. You can't help someone else if you're not feeling balances and rested. I thought that my mother had to always have someone with her, and thought that I had to cater to her every need and listen to her every word patiently (it was 99.99% negative and ungrateful garbage coming out of her mouth). She took me for granted because she was assured that I'll always be there with her like a slave, and pretty much treated me like a slave. In hindsight, I should have taken more time to myself to reset my mind, and it would probably have been better for her too if she didn't have someone there all the time with her. She had been living by herself for years and it was probably freaking her out to have me there/was too tempting not to engage in toddler type of behaviors to demand attention from me/break boredom. So here, I vented some. Don't judge me either

You do love your mother with caregiving methods on your own. Hope you do not get stressed out or even hurt, either mentally or physically, while doing this very difficult task. Hiring help from an agency means help is available, and these professionals are covered with benefits, especially worker's comp. It is expensive, but your mother will pay for more help than you are capable of doing. No one can work 24/7. Just to be a daughter and friend to your mother. You are important and need to take a break and better care of yourself, even to have some fun. My advice is to get help for your mother, She worked for it, even it means spending her funds down to Medicaid level.

I am pretty sure that MANY of us lose our temper, or get upset with our loved ones, from time to time.

You should join the Alzheimer's Dementia Caregiver's FB Support Group. You can vent there without any judgment:

https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share

You're only human. So cut yourself some slack. You need help because there's only 24 hours in a day.
Bring in some homecare help to give you a hand and to give you some time off from caregiving. Send your mother to adult day care a couple days a week. Or look into permanent placement for her in managed care. No one can be expected to do it all with no help while maintaining saintly patience 24/7.

Sorry ... I am going to be judge mental. I am judging that you a human and are and a loving caring child who is surprised at the changes a stroke can wreck in a patient. Take 5 minutes at any time of the day to exhale deeply and know that you are doing the very best you can.
My Mom had a stroke at 88 and made a remarkable comeback although her memory and her mathematical skills were severely compromised (drove her nuts because she loved math). Hopefully, your Mom also had acute rehab and then a few more weeks of PT and OT. even when she came home I needed to have 24/7 care for her for the first 6 weeks. One of the attending nurses at the hospitals (check with nurses and therapists because they are the ones who see the patients most often after the stroke) told me it was take six months before my Mom would hit her recovery mark. That nurse was right on target!!

It is normal to get frustrated. Stop and exhale. And then importantly, forgive yourself.

Peace and blessings to you on this difficult journey

Having worked full-time and cared for grandparents, parents, and a 2nd cousin over a period of 25 years, and currently caring for my youngest brother, who suffers dementia. Thankfully, at this time, I’m professionally retired. I feel I fully understand the feeling of total exhaustion and aloneness you feel/suffer….And, as is typically the case, I was one of five kids, but only had one sibling who stepped up for a day here-and-there when I totally collapsed in my emotions.

The single most important thing I’ve learned and recommend is processing ALL of your emotions in a healthy way whenever you feel them, and let them play out, whether they express as tears, anger, grief/loss, doom, or joy. Handwriting your thoughts, feelings, emotions (whether by crying or writing them on paper) as you experience, or as soon thereafter as you can them, helps diffuse them and is especially effective with feelings of anger, frustration, grief, anticipatory loss, and doom. I found it ironic that, at 40y/o, after the sudden loss of my Grandmother, I learned to let myself cry when I’m sad from the very person who taught me to repress my emotions when I was a child…my Mother. Bless her, she learned it from her Mother. Between family illnesses and deaths, good professional Counseling taught me it’s OK and therapeutic to cry my emotions. While no longer a traditional “religious” person per se, I’ve learned that “listening” to your inner self and/or spiritual sense (if you are so inclined) reaps emotional health and well-being for not only you, but your loved ones and the medical team assisting you through your Mother’s Journey of Life and your own. Caregiving is, undoubtedly, the hardest job we’ll ever have, but, I consider all my emotions to be the “price” I pay for having my loving and supportive family members help me along my Journey. Blessings to you all.

Get help coming in. Right away.
You are on the fast track towards b u r n o u t.

Hello Summer girl when My Dad had a stroke Tufts ordered Physical therapy 4 times a week for 5 Months . Boston Senior home care ordered a CNA to bathe him twice a week and clean . I spoke with social workers and attended a caretaker group once a week for support . Meals on Wheels came every day to bring Lunch . VNA came in twice a week For 5 months this Past Spring and summer . Your Primary care Physician can order physical therapy and give you a cane or Rollator which is a walker on wheels . Have you a private Therapist to talk to for yourself ? See if you can find a community acupuncture clinic where you can relax and meditate . Find a reiki group on Face Book . Keep yourself Healthy and reach out . There are all sorts of elder services connect with a social worker at MGH and ask for resources and help. Seeing a Nuerologist at the Stroke center is very helpful to do memory tests , an MRI and speak with a neuropsychologist . It gets Better .

I've learned over the last 10+ years that educating myself on the brain changes helps me CONSIDERABLY to realize the interactions are not personal; it is the brain chemistry. So . . . my feelings often turn to COMPASSION.

But we all feel and have our moments, and vulnerabilities.

If needed, take 'time outs' to regroup.
You need breaks - to renew yourself.
You must find ways to do this.
If you do not, you will burn out and you will continue to take out your stress(ors) on her.

This is very difficult work. Especially for a family member.
Find ways to renew yourself - even meditating for 5 minutes a day will help.

No judgments except there isn't an 'e' in it.
Think if this as a learning experience - and a way to learn how to take care of YOU so you can be more available to your mother. Which is true.

Get support from friends. See if you can get volunteers, church folks, or anyone to help you with the care you provide - to give yourself a break ON A REGULAR basis. It is essential you be the best you can be - for you - and your mom('s quality care).

We've all been there. It isn't easy to not take things personally when we work so hard and with care and compassion. Think: brain chemistry "this isn't my mother talking to me."

Gena Galenski
Touch Matters

Frustration is a human emotion, especially when we don't quite understand all that a stroke (or any disease) actually encompasses.

It sounds like it's time to get educated and to seek assistance at home or seek out placement if required:

1. Make her an appointment with a neurologist and seek out an appointment at a stroke center. If she is capable of a short travel time, you might want to head over to Boston: https://www.massgeneral.org/neurology/stop-stroke/welcomekekeiv
(ask about classes for the family caregivers)

2. Adult Protective Services can evaluate the situation and advise what assistance is needed and help her apply for Medicaid if that's the route she's going.

3. Elder Law Attorney can walk you through the legal and financial issues that you will find yourself in. Google " elder law attorney in Lowell MA"

4. American Stroke Association: (copy and paste) https://www.stroke.org/

Being an only child does not require that you give up your life or your happiness, so let the professionals help you navigate the systems so that you can get help and free yourself up for time with friends and family. For now, check out Visiting Angels and the Care Advisor (here on the right)

get therapy. and make time for yourself. I felt the same way when things started to go south with my mother. It's hard to rectify the person she was with the person she is and that it's not done 'on purpose' because sometimes they can seem lucid and fine and the next, not so much.

I think therapy is the best thing to do, on a regular basis. Just to vent to someone who isn't related or a friend.

Then making sure you take breaks away from everything, home, her work, etc. At first I felt guilty because 'she needed me', but in reality she can get by for an hour, day, week or month with a caregiver. She has lived her life. She probably didn't have to take care of an elderly parent like you are. You are not really living your life, so it's very unfair. Don't feel guilty. You need to live your life. so set up a schedule where you take time off. and stick to it. regardless of what happens. It'll help both you and her.

First let me say that while it seems logical that working from home sets you up well to take a LO in and be their caregiver it isn’t the case, even with less debilitated LO’s. Being home and available all the time makes it harder in fact I think. Everyone needs a break, every day and twice on weekends, wether that be from caregiving, from work or from life (think vacations). Caregivers we hire go home and don’t work 7 days a week, even live in caregivers get time off just because you are the patients family, closest family doesn’t mean you won’t need time off and all too often we never hear this or it doesn’t sink in until we are too deep in for an easy solution or to start all over again.

I know insurance comes into play here but are you taking her to OT and PT or are they coming in? I know after my moms stroke she went to acute rehab but once she no longer qualified for that yet she still needed ST and couldn’t be left alone yet we were given the choice between the next level down in patient rehab (short term nursing home type), getting limited help at home with ST coming in but not often or specific speech therapist or getting her out patient speech therapy which was most important at the time so we chose that. This left us having to stay with her 24/7 and while my brother and I were able to switch off some I was living with them in his house because I live 5 hrs away and my brother had to work. We did hire a part time caregiver to come in for a few hours a few days a week so I could get out to do shopping and that sort of thing but just that was a huge help because after all how many of us spend 24/7 with the family we live with (spouse, children, parents not needing care), it’s not natural or healthy to be attached to anyone 24/7 for long.

It would be well worth looking into a slight shift in the situation, even if it’s just having someone come in 4 hrs a day while you simply do your work as though you were out at the office. Check with her doctor to see about ordering a visiting nurse evaluation or call your local Agency on Aging to get an assessment if the doctor won’t order it because they will tell you how much can or can’t be covered by insurance or state programs. If mom is resistant tell her you need to know she is safe and cared for, by doctors orders she can’t be alone and you just haven’t had enough of a block of time to keep up with work so this is for you. You need to keep doing your job well and you need time to go do errands so making the best of this is what she can do for you.

Hang in there, you are not the only one and you are human, everyone gets on each other’s nerves even when they have no control over it, don’t mean it and can’t help themselves. No shame unless you aren’t proactive about checking yourself, letting yourself off the hook, finding outlets and getting help. Sounds exhausting doesn’t it, lol.

It took me a long time to learn this.. mentally envision the word patience and take a breath, a pause , envision again if need be, before responding…

I was no where near as patient as I should have been with my mom over the many years . She frustrated me with her lack of thought for catering for herself… I do regret not being better ! I wish you peace in all this…

No one tells you or prepares you for this! I had the same feelings! I even look back and think to myself - oh how I wish I didn't do this or that. Its been two years since my Daddy has been gone and 14 years since my Mama has been gone and I still feel this way... You need to have a break! Hire someone for a few hours a day so you can have a break! Go to a movie, get your nails done, go "fun shopping", whatever YOU need to do to relax. Also, you need to accept that repeating and showing her how to do it over and over again is just the way its gonna be.

Please know that you cannot do this alone...talk to a counselor, a supportive friend, join a support group, and hash out your feelings. You are not alone in feeling this way. My mom had been living with me since my father died, but once her dementia got worse, I never knew how hard it was to really take care of her until I had to do the physical labor and maintaining her health all by myself. That and also taking care of a disabled child and the pandemic really took a toll on my mental state. I really just had to face my limitations and get help. That you're lashing out at the world means that your mind and even your body is telling you something you won't admit to yourself...that you are exhausted and you need help. Please take a breath...or better yet, a break, take stock of your situation and find ways to make things better for you so that you can take better care of your mother. A shift in thinking, being able to recharge your batteries will allow you to keep your emotions mellow enough to be able to help your mother through this stage in her life. Love and healing energies to you.

I, too, am an only child, and (Hubby and) I took care of my mom for 5 years when she had Alzheimer's, (that was actually preceeded by a mild stroke several years earlier). Once, we were at Target, and she wandered out the door. I went outside and said, "How can I do a little shopping if you're going to wander out the door?!" I knew that she wouldn't have done that if she had her full mind. I, too, got aggravated with her, but also with me, for getting annoyed. I found that finding a sense of humor when I could, helped. I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." When people say that carergivers are often stressed, they'd be right on "Target."

Oh summergirl , I would be really surprised if any one here would give you a rough time over your feelings . Being honest I believe everyone on this site has felt the same way at times… These very emotions are what brought me to a CareTakers group. I was stressed out and very sharp with my man . It’s been almost 3 years that I have attended these meetings and they have helped immensely. The first thing that impacted me was “ His Brain Is Broken “ then.. It is not that he WON’T do what is expected, It that he CAN’T… Prayers are with you , you are not alone .

I have struggled with inpatient outbursts with my Mom as well. I attribute it to compassion fatigue and caregiver burnout.

One thing that has been extremely helpful to me and my father is hiring an aid from a home healthcare agency. She comes 3x/week to give showers, hygiene stuff, and almost anything else we need. One day is 4 hours, the other day is 2 and the third day is only 1 hour.

It’s worth every penny. There are many in your area.


Sending love and support.

LONG POST: My mom took care of her husband who had a stroke and ended up getting a caregiver. She found her first one at a funeral of a friend (she knew he had a excellent caregiver). He worked 2-9 so he could make dinner and care for my dad and put him in bed for the night. That worked well and he decided to get his RN so he worked until he graduated. The second one mom found through the PT/OT. That was a gold mine of info. They know the best and worst caregivers. By that time the hours were longer because mom needed to have someone help her get dad up and it was a 2 person job.

When my mom needed care, my husband and I did it and it was exhausting. 8 months later, we had a family event and asked mom to come with us or look for a apartment in AL. She first chose to travel and then decided to look at places. (Lots of praying through this) I chose places she could afford and had good ratings. She was happily surprised with having a independent life in a nice place that she saw and moved in for our travels away. She was supposed to be there 2.5 months but loved it so much, she never left. (Been there 2 years now).
WHAT I Learned is do not get the paid services they offer (showers and personal care, escort to dining hall….it was a waste of money. When they don’t do it, it is because of staffing or that she refused. LAME! Since they don’t tell me and still take the money for services not rendered. She has medications given by the facility (I don’t use their service either because I want to know exactly what mom is taking-I reorder and have meds delivered). I got her a Visiting Angel to come in 3 days a week and then because I was there visiting her, I got to know that there were private caregivers in the building. I connected with one and she got me the VERY Best caregiver for mom. She works 1-5 ish and that way mom gets lunch and dinner, showers 3 days a week and gets her mouth care every day. I guess it wasn’t much fun for mom with me living with her because she likes her place so much and BEST Part is I get to be her daughter and advocate. I did put 3 blink cameras in the apartment so i can have peace of mind. Mom thinks they are speakers and they are connected to the wifi. I didn’t ask, I just did it. The facility eventually put a sign up stating surveillance but mom doesn't notice. She also has an Alexa Echo Show so I can drop in and I can remotely start music for her from my phone or talk to her face to face. She has a iphone that she cannot use anymore, so I got her a stand up charger and zip tied the phone to it. I contacted MintMobile and got her a phone plan for 20 dollars a month including taxes. I went ahead and got her a new phone number so she would not get disruptive phone calls and I set her setting to only ring and announce callers from her contact list. This way, if the wifi is down, I can still contact her. The phone rings for 10 seconds and automatically answers and I just call out, HI Mom, Are you there? She is usually lying down or watching TV and we talk. I have to hang up because she doesn’t know how to do it. The cameras have been my sanity saver and now I know that mom usually sleeps all night.

Bottom line: you will be still “on” even though your mom is not in the house with you but you will sleep better knowing that she is safe, 24/7 oversight and getting her medications and food. I didn’t put mom in memory care because she is still aware and that would break her heart. She is also not a wanderer or flight risk. Having control over her care with the private caregivers has been wonderful because they report to me! They send me a text at the end of every shift with a summary. They also write on the calendar the highlights of the shift.

ALSO: when living with mom and her memory issues and the stress of being responsible for another adult; I knew that God already knew this was going to happen-I memorized most of James 1 We are good now.

You are not alone. You are carrying a heavy load of responsibility. Have you considered in home Healthcare assistance? My wife and I don’t work full time as you do yet it still can be emotionally, mentally and physically exhausting to care for an aging parent that has health issues. My mom has moderate to severe dementia and memory issues. Despite our hard work to care for her, she has little or no appreciation for what we do. I get upset with her too but I take a moment and put myself in her shoes and imagine how she feels when she reflects on her life so far.

What you are feeling is what all of us here feel. All of us are learning as we go through each day.

In home Healthcare visits give us a break.

I was a caregiver myself for my 92-year-old mother back in 2012. I just got laid off from my job but still felt very stressed helping her after her back injury. She could walk with a cane but also my assistance. Unfortunately, I had to return to work, so my out of state family and I finally had her placed in facilities to free me up for work and professional help since she took advantage of me.