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FullCircle Asked May 2019

Just so tired of caring for my mom- and feeling like an awful daughter :(

My Mom is 84 and has severe copd. She had heart surgery 6 years ago and was not able to go home after a 4 month rehab so I found an assisted living facility (researched tons, moved her in, managed the clean out and sell of her house etc). That first year I was visiting her in the hospital 4-5 times a week and then in the assisted living facility 2-3 times a week. I was afraid she was going to die and I wanted that time with her... well here we are 5 years later I am just tired.


She has gotten progressively worse and while she does not live with me, I am really the only family she has locally so everything is on me. I run her errands weekly for things she needs , manager her bills, orders from amazon, take her out to lunch every so often etc.


I work full time and have 3 kids - 2 in competitive club sports and I am feeling so resentful these days.


She was in the hospital in March and then again last month and now she is in rehab and we are deciding if and when she can go back to assisted living but I’m back to visiting her or dropping things buy 4-5 times a week and I’m exhausted.


I have one brother who lives 2.5 hours away who visits occasionally but that is it.


I'm sad and tired and work out and feel so guilty.


Her lung doctor told me last week that she is very very severe but at the same time can hang on like this for a long time and to see her decline is killing me - both emotionally and physically.


and if I have one more person tell me I should just be glad to have my mother still on this earth - I’m going to lose my mind.

Ahmijoy May 2019
First of all, stop letting those people who tell you how “lucky“ you are get to you. Just fix them with a sympathetic look that says how sorry you are that they are so clueless.

Consider skilled nursing for your mother. With her chronic and severe health problems, she is beyond assisted living. She needs supervised medical care. This should cut down on her hospital visits. If she is in skilled nursing, you will not have to do so much for her.

Do you you really need to run there 4-5 times a week to drop things off and visit? Can you just collect these things and drop them off once or twice a week? What needs does she have that you need to shop for weekly? What bills does she have that you have to manage? You can ask her to cut down on the Amazon orders too, or have them sent directly to the facility. If she has a small room, chances are she will not have space for these things. Take a good look at what you need to do for her versus what she expects you to do. There may be things you can let go. Since she is in AL, there shouldn’t be that much you need to do. Rely on what they provide for her rather than what she might expect you to provide.

You can always call a Care Conference and speak with the staff at the AL for their suggestions.
DILKimba May 2019
Excellent advice!
lkdrymom May 2019
Everyone is right. Why are you visiting so often? My father ends up in rehab 2-3 times a year. I bring him clothing once then I let rehab do what they are there to do. No more visits. At assisted living I visit once every three weeks. His bills are sent directly to my house. They supply most everything so I don’t need to be running weekly errands. What could you mother possibly need that you have to make more than one weekly visit? You don’t need to be doing her laundry they will do that. If you are visiting all the time your mother will not try to meet others as you are her source of entertainment. If she chooses not to that is on her. You can’t be responsible for her happiness only she can.

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NeedHelpWithMom May 2019
Know the feeling. It’s extremely frustrating and exhausting! Hugs!

I stopped talking to a friend that constantly made that same remark to me, saying how lucky I was! How about them saying how lucky our moms are to have us, right?

Dette58 May 2019
All I can tell you is to hang in there. I am dealing with (somewhat) the same issue. My mom was diagnosed with dementia several years ago. I am her primary caregiver and the only girl out of six children with 2 siblings dealing with major health issues themselves. I'm at mom's house 7 days a week at least 6 hours out of each day. One brother comes in once every 7 weeks or so and is not heard from for at least another 7 weeks once he returns home. They (brothers) rarely ask about or even call mom anymore. They talk about all the things they do (ie, the walks they take each day, yoga) without thinking about the fact that I don't have that leisure (neither do they really care).

I retired 1 year ago and I now work much harder than I've ever worked in my life. No one was willing to give up their lives or lifestyle in order to take on this challenge. And I stress, "CHALLENGE."
We have a couple of ladies who comes in a few times per week but when they decide not to work I'm with mom as long as 15 hours. This is a fluid situation and sounds like yours is as well. I

If you don't get respite your anguish (from tiredness) will be placed on something or someone else.

I will say that you must have time away from your situation. There may programs in your area to give you respite, or if you have friends who are willing to step in and give you a break allow them to do so. One thing for sure is you need time away.

GingerMay May 2019
You work full time and have 3 kids, so that is your priority. You and your life are number one. Let the ALF care for your mother and do what they are getting paid to do. I totally get where you are coming from. Being sad, tired, and feeling like your parent's long slow decline will kill you emotionally and physically might be a warning sign. Step back. If you see your mother needs things, make notes and visit once per week and address all items at that time. If something else pops up, address it at the next week's visit. Your energy and time should be spent on your life and if you have a spouse or significant other, you deserve to nourish that relationship. Caring for an elderly parent can suck the life force out of you, but you can put a boundary around it to preserve your life and sanity.

JoAnn29 May 2019
Maybe its time for LTC. All Moms needs will be met. They supply everything, diapers, toothpaste, shampoo, soap. They will do laundry. If Mom is private pay then you will need to continue with her finances. When money is running out, you can switch over to Medicaid. Then make the LTC payee to SS and any pension. At the time Medicaid takes over, you will not be able to pay bills because there will be no money.

While she is in rehab, have her evaluated for LTC. This would be the time to change her over. There comes a time when an AL is not enough.
FullCircle May 2019
We have a team meeting tomorrow to review her goals to go back to AL. I suspect she will be in rehab for another week or so. She wants to go back to AL and even if we had someone visit and help her for a few hours every day - I think it would be better for her. The rehab is tiny and there is very little interaction and all she does is sit and watch tv all day and leave me messages of thugs she needs. Today it was more pens and life saver mints that she needs urgently.

she has sizable investments so could self pay at the nursing home for a number of years - I’m just not sure that’s the way to go but will defer to what they recommend.
Kittybee May 2019
Others have said it. Can you cut the 4-5 times a week to 1-2? Or 2-3? That would be several hours per week you'd get back when you can do self-care things. Your mom is safe and being well cared for. Unless I missed something in your post, she shouldn't require you to be there almost every day. She might WANT you, but it's not a requirement. Mints and pens are not an emergency.

If you're worried she'll get bored if you're not there so much, see if the facility she's in has activities or volunteers who will visit with her.

Of course you're exhausted. Give yourself a break; you and your family will be healthier for it.

Makeadifference May 2019
Hello FullCircle,

I was just reading an article and I will never say to you
"just be glad to have your mother still on this earth" That feels very cruel to tell you and I am sorry that was said. You are reaching out to us for help. I saw a great article, and am rarely a person that responds but would like to:
The Atlantic.com Business Section THE CRISIS FACING AMERICA'S WORKING DAUGHTERS: Women with aging parents are unseen and widely ignored. They can read all day and all night about the many stresses of working motherhood including pregnancy discrimination, the wage gap, the mommy wars, leaning in, and opting out, but there is very little out there to assist between their careers and the needs of their aging parents. 44 million unpaid eldercare/full time working men and women (over 90% are women) Women lose an average of $324,004 in compensation due to caregiving.

What I want to tell you is this. I am a professional caregiver, once volunteered to be my mothers unpaid Alzheimer's Caregiver, quit my Banking Position of 25 years to do the selfless act, and do my best to care for and learn about Alzheimer's Disease, through to the end, when my mother quietly faded in February 20, 2014.

At the end of 10 years, I was very burned out, and did only wish at that time, I had stopped to take some phone numbers down to help myself. I don't know with a full time job and children, really how you can give 100% to anything. The person you need to focus on is you. You have given your all to your mother, your children, what about you? I can only imagine how you feel! We never know fully what one is going through. Remember, you are only one person. OUR CARGIVING FOR FAMILIES, AND OTHERS IS AT A CRISIS LEVEL BECAUSE THERE WILL ONLY BE MORE PEOPLE THAT NEED ASSISTANCE AROUND. This includes Caregivers to people that they reach out to as well as loving family members.

Woman are the main caregivers to people. Yes, men I have the utmost respect for all of you out there, but this is for her.
Give yourself permission to relax. Allow yourself to not go one or two times a week. Say mom, I need to do this, I will be there xyz date and time. If she is in assisted living, I realize the positives and negatives, but you need to take time for you. Where do you live? Meaning what city and state?
Long-term day in and out stress of any kind, including caregiver stress can lead to light to severe health problems. For me, I almost died, and that was my wake up call in October of 2014, month's after her death. I am not trying to scare you, but when I started this loving venture, I was healthy as a horse. Now, after I have taken 5 years, to focus on being mindful, self focused, and that does not mean selfish, I am selfless, I have chosen with great success to do this again, and with the tools I learned, as a professional, it is going very well. Every day is different. YOU ARE LOVED!

Find Caregiving resources in your community to help you.
Senior Center's have a list of volunteers that can do the shopping.
Ask for and accept help - Make a list of ways others can help you. Let helpers choose what they would like to do. Someone might sit with her, or run an errand, and another might do the groceries.
Join a support group for caregivers. - pick up caregiving tips, and get support from others who face the same challenges as you do.

For more information about caregiver stress, call the OWH Helpline at 1-800-994-9662 or contact the following organizations:
Centers for Medicare and Medicaid Services (CMS), HHS
Phone Number: 800-633-4227
Eldercare Locator, Administration on Aging, HHS
Phone Number: 800-677-1116
National Institute on Aging (NIA), NIH, HHS
Phone Number: 800-222-2225
Family Caregiver Alliance(link is external)

God Bless, and let me know how you are doing and what State you live in.
I have alot of resources to assist.
Daughter33 May 2019
thank you so very much for posting all the help numbers. I never knew there were so many women who are going thru what I am. Thanks to ALL the people who are posting their stress, burnout, help, and journey in taking care of elderly parents. Reading these post since I joined last week has given me permission to have feelings of guilt and selfishness. I know I'm ok and need to take care of myself in order to take care of my family. I dont have to carry the guilt baggage around any more. I still love my mom as much as ever. Stress doesn't mean I don't love her, but I also need help. Im reading a lot that many of the elderly, with or without dementia, seem to be very manipulating and angry. I guess when you have a deteriorating body and a mind that remembers being healthy and 40, it is very frustrating. I have a good mind and fairly healthy body, but no life. Im looking for that BALANCE of caring for her and my family. Thanx to all of you again.
gnorth1234 May 2019
I agree with you totally about being burned out and not wanting to hear friends and relatives tell you to be glad you still have her with you! They obviously have never been in your shoes and don't know what the heck they are talking about! It's the most challenging job I can think of as I take care of my 93 year old mother 24/7 in a small shared apartment and I feel your pain and resentment. My brother is a real son of a you know what as he has abandoned both me and my mother. He has left me here to watch her slowly pass away and is so selfish of him and as you mentioned your brother, it sounds like you and I are rowing a similar boat! You will find some great advice here on this forum and most caregivers here understand and will help you muster up the strength to find resources and great support and encouragement. I have wanted to just run away and call my brother and tell him to come and get her because I cannot do this another day. (have been doing this for almost 10 years now and have hit rock bottom twice). Please don't allow yourself to get to that point. Do you have the means to hire someone who could do some of those things for you? In my city, Senior Services provides free rides for seniors to medical appointments, companion care, and meals on wheels. I just hired 2 wonderful caregivers from Catholic Charities who will watch over my mother for $8.00 an hour which is extremely inexpensive compared to an agency where you will pay three times as much for both caregiver and a fee to the company. Good luck and I hope you find what you need here.
TropicalLady May 2019
I am so glad I am not the only one who wanted to just leave her mother with her non-helping brother! My brother - although he has a health background and is retired now and fully capable of helping - will not help me for an hour or take her (or my father who passed five years ago from alzheimer's complications) - for an hour let alone a day or a week - even when I told him I thought I was having a nervous breakdown. So I felt like I lost a brother besides my parents. There should be a law that siblings have to take the parent for at least awhile and then at least they might have a little more sympathy and empathy for what we're dealing with!

On another topic, my just-turned 100 mother will cry and whine constantly and ask me what she should be doing - keeps asking me and when I tell her either nothing or just eating and drinking - gets really angry at me the next minute because I didn't tell her what to do. Has anyone ever experienced anything like this?

Tonight is my first night on this forum and am thankful I am already getting some great advice like the Catholic Charities helpers - thank you for sharing!
Blessings and luck to all!
anonymous432569 May 2019
Fullcircle, my heart breaks for you. You have WAYYY too much on your plate. I did not hear anything that you do for yourself to refocus and give yourself time to emotionally recharge. This is physically, emotionally draining caring for a parent + full time work + kids sporting events = burnout BIG TIME!
Take a day off for YOU. I hope you are doing that. Your Mom seems to be cared for at the facility maybe cut back on some things from weekly to every two weeks. You are an AMAZING Mom, Daughter and employee for juggling all of this, you are a warrior!! God Bless and sending you hugs for some peace and calm in your life since you need that for you :)

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