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?

You're under a great deal of stress, and *both* of you are learning a 'new normal'. The fact that you know you need to do better tells me you're on the right path. I don't know if it's possible or not, but try to get as much of an hour of exercise every day, brisk if possible, but even a walk will do. I would go bonkers without it.

This is a very stressful situation and won't get better soon. There are follow-on issues to strokes that no one tells you about at the outset, so be prepared. It would be good to line up help that you can call on when you need it - sitters, household help, etc. Another thing that concerns me is, "she is my world." That's very sweet, but you need to think about expanding your world so that she isn't all of it. You're going to need to build a support group so you can get out once in a while. Being enmeshed in a stroke patient's life will seem like running on a hamster wheel, because you'll be reminding her of the same thing over and over ad infinitum. There are stroke support groups, so maybe you should contact one and see what they offer for both of you. Good luck, and I'm sorry you're having to deal with this.

First I will say that all of us who have cared for a loved one has lost their patience with them at one point or another, but then I will say that that is usually a sign that we are getting burned out and that we MUST find relief some way.
You are learning quickly that you CANNOT be her one and only for much longer, so it may be time to hire(with moms money)some in home help to come in at least a few days a week to give you a break so you can go and do the fun things you enjoy. You can also look into taking her to an Adult Day Care Center in your area for again at least a few days a week(she could go up to 5 days if needed)to give you a break.
I would also recommend buying some inexpensive security cameras(I used Blink)that you can place throughout the house so that when you do go out and about you can check on her through your phone to make sure she's ok, and you can talk to her through them and hear her as well. They're worth every penny.
I used them when my husband was completely bedridden in our home the last 22 months of his life and I too was his only caregiver. It gave me the freedom to go to the grocery store, lunch or supper with friends, or just walk around my neighborhood, knowing that I could check in on him anytime.
You MUST take care of yourself!!! You are just as important as your mom, so start looking into getting some help brought in to assist you before you reach your breaking point.
God bless you.

If Mom can afford it, maybe have someone come in when PT and OT are not there. Really, if you were working outside the home You would need to hire someone. If Mom is considered low income, maybe Medicaid could help.

Hi Summer! Well met fellow only, still working, caring for elderly mom! It's a handful isn't it. And yes, I do have the screaming meemees sometimes. It's just part of the process, I think. The pattern is thus: Repeat request/question 5 or 6 times, patient does/says something to the complete opposite of request (or does something a tad whacky), lose patience with patient, yelling ensues, patient pouts/cries/etc., then feel like an utter creep. I had been to therapy years ago and didn't find it very helpful (and I work for/with therapists so that I have a jaded view in their regard--though for severe mental health issues they are very, very helpful). And let me say, "gurl, it does not yet easier, but you adapt to the circumstances." You'll need to hire some part time help at the very least. This way you can go to work or food shopping or screaming into the night if you so wish. Most of self-care or "fun times" are gone with the wind. The most difficult part is accepting that your lives have changed and not for the better. Once you let go of the fantasy of having time for yourself or a social life, the anger subsides a little. Eventually, you'll build some time for calls or texts with friends and if you are lucky, you'll be able to take mom on outings with you (though it will be a bit difficult). You can do this!!!!!!!! You are normal in your reactions!!!! Get some help on board, even if it's for three hours a day (or even three days a week)!!!!

Sorry you and Mom are going through such a rough time. Working from home is still a workday; you need time to focus on your work. If you're not self-employed, can/have you take(n) some leave time? Is FMLA an option?

And, honestly, there isn't a caregiver who hasn't gotten impatient with their loved one at some point. See it more as resenting the condition that's causing the need to repeat things endlessly. And there's a point where we have to acknowledge the new Way Things Are.

If Mom isn't eligible for skilled home care, can you hire someone to come in for a few hours a week? Veterans and spouses are eligible for home services through the Department of Veterans Affairs. I found this info on your State's website:

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Elder Services of Merrimack Valley and Northshore
800-892-0890
Assistance with home care, care management, Meals on Wheels, support for seniors and caregivers.
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Give yourself a break. It's human to react as you're reacting. Getting help to help your mom should alleviate some of the stress on you both. You could also:
~ Take advantage of stroke caregiver support groups (search at www.stroke.org) for practical things you can do for yourself and Mom.
~ Play music; it's a powerful mood management tool
~ Don't forget your spiritual life. What comforts and drives your hope for the
future can keep you grounded.
~ If your employer has an employee assistance program, see what that can offer
~ Deep breaths

Best wishes. Be well.

I would consider getting help for yourself to iron out the realities of the situation, the facts, the ways you feel your reactions are not quite on level with the situation. I would consider the counseling of a Certified Licensed Social Worker in private practice counseling as they are often the very best at understanding life transitions work; it's what they deal with in their work. I think this will help you getting a more realistic view of what to expect from your Mom ongoing (as this will become worse, not better) and of your own wishes, intentions, limitations to keep doing inhome care and a full time job. I long knew I was not cut out to do in home care, no matter how I loved my family, and I was a nurse. My limitations would never have allowed this.
Meanwhile, until you get a bit of support for yourself, be easy on yourself. We are none of us Saints nor up for Sainthood. We all make mistakes; we all get frustrated and act out of that frustration. A sit down, look in they eye and tell someone we LOVE them, and recognize that we can be frustrated and inappropriate, with a heart-felt apology will go such a long way to let Mom know you love her.
I sure wish you the best.

My least favorite memory of caregiving is when the rehab center was determining whether I could take my LO home and be a responsible caregiver. I got the steely eye from the social worker, who had asked me about my life and my career. She said, "Well, you can forget all that. You're a caregiver now." Very tactless, but she was right.

Summergirl, my heart goes out to you.

I’m full time caregiver to my 91 yr old mother and lose patience and get the guilt..I have video cameras in the home so wgen I go to supermarket I can watch her on my iPhone .,they are sold on Amazon ie Vimtag and so easy to setup amd onky$30-50 bucks each

I, too, am an only child with a 91 year old mom. It is really tough, as we don’t have siblings to share our burden, our joy, or our memories of our childhood with—our mom is indeed “our world.” She is that connection to our past. So as they age, and we age, accepting whatever comes along with that aging—health issues, memory loss, loss of physicality, is hard. It is hard on you and on her. Time doesn’t stand still.

I find that a therapist helps. Allowing friends to help you when they are able is a a good option. Invite them in to visit with her while you go do something for you. Meditation is great too; try the calm app.

And this article really helped me. https://www.agingcare.com/articles/caregiver-fix-it-mentality-leads-to-burnout-152629.htm

We can’t fix old. We, especially as only children, have such an allegiance to our parents, and we fight like hell internally to push back the clock. Accepting what is will free you of some of that anxiety, fear and guilt.

Take it a day at a time. You are doing the best you can. She knows you love her and she loves you. And when you start to lose your patience, step back and take deep breaths.

Work on building a support system with outside help—friends, skilled nursing, groceries delivered, etc. Having activities and dates on the calendar for you, and only you, will help you tremendously. Put in place some supports for mom when you step out and do something you enjoy—whatever it is. We, only children, also think no one can do it better than we can. We need to control it all, but we can’t. One of her friends or your friends can sit with her while you take some time for you.

Hang in there. I get it.

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.

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.

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.

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.

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, 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."

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.

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.

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…

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.

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.

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)

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

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 .

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

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.

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

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.

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