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Hello, my mother had a stroke 8 weeks ago and has recently came home. I am her only caregiver and am maintaining our home, cooking, cleaning etc. I work full time from home so I can take care of her. My days are long and like all caregivers, I have no time to myself. I am finding that I am getting upset with her as I keep having to repeat myself as her memory is not what it used to be. I don’t think I have come to terms with her having a stroke and get frustrated when she doesn’t follow the advice I give her or when I show her multiple times how to do a simple task and she forgets. I feel like an awful daughter and very guilty. I love her dearly and she is my world. What can I do to manage my emotions in a healthier way? Thanks in advance for your replies.

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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.
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Reply to Fawnby
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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.
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Summergirl Oct 15, 2022
Thank you so much for your wonderful advice.
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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.
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Summergirl Oct 15, 2022
Thank you so much. I will indeed look for external support.
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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.
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KNance72 Oct 21, 2022
I find the calm app and green Noise very helpful for sleep . I will watch the green Noise app for sleep over and over again on Instagram .
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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.
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Summergirl Oct 15, 2022
Thank you so much. I have only just seeing a psychologist as well and hope in time my emotional state will improve.
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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.
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Caregiverstress Oct 21, 2022
I had someone tell me something similar. Basically that my life as I know it is over and I must pack up and move to be near my father. I told them that caregiving is a choice, my choice, and I will do what I can do from where I was but that I would continue live my life. We often forget that it is A CHOICE. Nobody can force you to be a caregiver.
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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.
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Summergirl Oct 14, 2022
Thank you for your advice. Unfortunately I have been advised by her OT and Physio that I shouldn’t leave her alone for a few weeks so I’m literally stuck at home. I had to get a prescription filled for her one evening and left her alone for a short while but had her on the phone speaking to me until I got home. It’s a very difficult situation.
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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.
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girlchild2 Oct 24, 2022
Thisis the Best advice/ situation I have heard to date! Saving for future use. Thank you for taking the time to explain everything!
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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.
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Reply to Lymie61
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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.
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