Am I being selfish?

DawnOfANewDay

My sister lives with my mom.  I go up on Tuesday, Thursday and Saturdays.  On Saturdays, I only spend 8:30 -1:00 at her house while my sister does some volunteer work.  I usually spend about 8 hours each on Tuesday and Thursdays at her house.  So, minimally 20 hours and sometimes more.

We also have someone come in for 4 hours on Wednesdays and 4 hours on Fridays.

I take care of all of my mom's appts. (doctors, dentist, hairdresser,etc), handle all finances, and do my mom's yardwork.

I also work about 30 hours a week. 

My sister didn't want to put her in a "home," so she said she would live there and take care of her.  She takes very good care of my mom.  

 I had a work obligation yesterday so I switched with the care provider and am at her house today.  I will also need to be at her house tomorrow form 8:00 until 1:00 and then again from 2:30 until my sister returns from an event so probably 7ish.  I will just stay there all day.  Sunday we are doing Monther's Day since we had to cancel due to illness last week.  

I'm just tired.  I am resentful.  I know that I shouldn't be.  I just don't know how long I can keep up this pace.  I feel like I don't have a free minute.  I know my sister bears the larger burden.  I just never wanted this obligation.  It wasn't so bad when my mother was able to be left alone, but now she needs someone there 24/7.

SusanB-dil

Hi DawnOfANewDay - You are helping care for mom and working, and you need to acknowledge that you feel what you feel.  I don't think you are being selfish. Working 30 hours plus being with her at least 20 hours, plus the appts, is more hours than being full-time and non-stop.  Plus you are cutting into the weekend, where you would normally get a break, and you are not getting that break. Could you increase the help you have on Wednesday and Friday to maybe have that person come on one of the weekdays you are normally there, perhaps?

May flowers

You have a lot on your plate! I cannot imagine doing all you do, working, plus the added responsibilities for your mom. We have done it all - housework/yard/appts/finances when he lived alone, overseeing care when he was at MC, and now caring for him at home in his final stages. The responsibilities are different but they are all draining.

To add to Susan’s suggestions, can some of the duties be farmed out? Maybe hire a teen to take care of yardwork, automate bill paying online, mobile hairdresser who will come to the house?

Maybe Saturdays you could hire someone to free up your weekend a little more.

I really respect what you are doing to support your mom and sister. We have zero support from family other than hospice. We keep being told they are willing to help but it never seems to work out. I know your sister must really appreciate all you do. 

DawnOfANewDay

Sadly, there is really no money for any of the extras.

harshedbuzz

DOAND-

That's a lot to unpack.

In deferring to your sister's wishes, you are still working a 50+ hour week with little time off to tend to your own life and other responsibilities. Are you married or do you have a significant other? Are you a parent/grandparent? Do you have a cook, cleaner and landscaper managing the care of your home or do you do that on top of what you're doing at mom's?

Who holds the POA and Advanced Healthcare Directive for mom?

While your sister is putting in more time, this is her choice. Is her lifestyle different than yours? Is she older, retired and financially set? Is the home care strategy entirely altruistic or is it something she sees as a win-win with her lowering her own cost of living in repayment for caregiving in mom's house and protecting an inheritance down the line by avoiding a facility? 

I wonder if selling or renting mom's house makes sense and relocating her and sis to an apartment where there's no maintenance or yardwork. Perhaps your mom can go longer between hair appointments with a wash and wear style. Around the time dad could no longer stay home alone, we revisited his medical care and ditched a number of routine specialist appointments. He didn't need the retina specialist, the cardiologist, allergist and such. Later as he progressed further, we moved to a more palliative model of care. 

It's OK to feel what you feel. It's also ok to revisit the arrangement with your sister if this schedule is not sustainable for you long term. 

HB

DawnOfANewDay

I am married. My spouse works much longer hours and has a mother that he helps.  My MIL needs nowhere near as much help as my mom.  There are also 5 children in his family.  I have an adult son.  

I am my mother's guardian.  My sister will benefit if my mother dies.  Her estates is VERY small.  I have chosen for my sister to get whatever is left (if any).  

Moving to an apartment is not possible.  

Her hair appts are every 2-3 months, not weekly or monthly.  

I just feel stuck.  If I choose memory care, she will go through her assets in less then a year.  One place I looked into wouldn't even take her application because she didn't have 12 months of assets,

Her only assets are her house and a very small amount is checking.  I contribute $500/month for bills.

Jo C.

This does indeed sound like a very stressful situation; I am sorry.  I do not think you are selfish; it does sound as though you are very worried and are on overload.

Perhaps it would be helpful to cut back on the time spent at your mothers?  Sometimes we create our own overdo's and do not realize it. Sometime it can even be that we hang on tight due to an unconscious need to keep careful control so that things do not begin to fall apart if we let loose just a bit.  Other times we feel overloaded not because of the things we are presently doing, but because we are projecting worries about the future.  I have been there.

Dental appts. at this stage would be either annually or "as needed"for a sudden problem issue; so that is not a routine over and over again.

We do not know how often your mother must go to an office appt. with her physician, so that cannot be measured.  How often is this necessary?

As for the hair appts. - she does not do this very often; only every two to three months.  From personal experience, I can share that there are beauticians that do indeed make home visits and most of them do not charge any more than they do at the shop, (and you are already paying at the shop.)  I did this with my mother with two different beauticians over time, and also when recovering from a surgery for myself, as well as for my stepdad; all with different beauticians.  Call your mother's beautician, let her know it has become too much of a taxing effort for your mother to go into the shop, and ask if she can do home appointments, OR if she can recommend another beautician who can if she is unable to do so.  You can also contact other hair cutters at different salons and also do an online search for your area as there are some beauticians that do at-home service only. 

As for the yard work - if one hires a high school teen or one from a church, the cost of mowing and edging is nominal.  Try.   One can use this person at intervals for weeding flower beds if that is an issue. It is worth far less than your time and nerves as well as gas for the car getting back and forth.  If the lawn is not mowed except every two weeks it will not be a negative.  Sometimes, churches will have people who will even volunteer such service for people who are in need. 

Some bill paying can be put on auto pay such as utilities, insurances and other fixed expenses.  I wrote the checks for bills that were not fixed and I did a monthly accounting report which took only a very short period of time - that helped me feel and keep in control and was no big deal.   I worked fulltime plus with both mother and step-dad with dementia, so by putting everything into a more simple approach was really helpful so I did not sink.  I also took both parents to their doctor's appts., so simplifying my approach and  not projecting into the future was necessary.  Still some stress, but had to make adjustments.  Learning to let go was the hardest lesson for me to learn, but when I did, it helped.

If this is not workable any longer, perhaps it is time to sit down with your sister and discuss this openly.  Since she is the primary 24 hour caregiver, getting her take on this would be helpful in reformatting how this is all being done.  Perhaps it would help to cut your hours at your mothers, and also perhaps to have a few weeks "respite" from the responsisbility and come back after a short leave.

If the plan is to place, your mother may have a short time she can pay privately, but will then need to apply for Medicaid for her cost of care, so be cautious to only look at facilities that will accept Medicaid.   If mother is declining and will need placement, then perhaps it would be a good idea for your sister to also make plans for what she will do for herself when she is no longer providing your mother's care since she lives with your mother.

Also, if you wish to have a place to talk and get good support and feedback, the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900, is good support. If you call, ask to be transferred to a Care Consultant.  There are no fees for this service and Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are wonderful support, great listeners, have information and can often assist us with our problem solving.  May be worth a try.

Hang in there and try to lessen the stress upon yourself. You have been doing so much over time, and as one daughter to another, I sure understand. Warmest thoughts are being sent your way.

J.

Jo C.

Yikes!   I just realized.  If your mother passes away when not on Medicaid, the plans for your sister are whatever you and she have decided upon.

However; be very careful if your mother is to be placed and will need to apply for Medicaid.  There are "lookback" periods for how an applicants money is spent and how property is in place. In some states, the lookback period is for five years; it can be different in other states.  If one gives away money or hides it, or if the property is given to someone else or it is sold, all of that has implications for how it was done if one has not met their state's Medicaid criteria.

You will want to look into this; an Elder Law Attorney can be most helpful with this if there are funds for such advice. Otherwise, it would be good to use whatever advice one can access in your state that is gratis.  Just be very cautious about the financial and property management.

Medicaid also wants to recover their costs of care after a beneficiaries death, so they also look at the assets left including any house.

There are ways to set oneself up for best outcome; if you can see an Elder Law Attorney, even just for one visit, this could help to position your mother, yourself and your sister as best can be done.

J.

DawnOfANewDay

I am just tired.  I feel like I need a giant vacation from it all.  I would just love to be able to visit when I feel like it and it's convenient for me.

Thank you for your responses.  I just feel like I am an angry, petulant toddler stamping my feet. There are so many days I just dread the thought of going to her house. 

As everyone here knows, it is exhausting.

I feel like if I cut back on the hours it will be harder on my sister.  None of this is easy and there are no answers.

mommyandme (m&m)

I’m so sorry you’re in the thick of all this and the feelings that go with it. I understand, as most of us here do. 

I think since caregiving is in our blood, we don’t feel right about taking time out for ourselves.  It doesn’t feel ok to be selfish. Unfortunately if we don’t, we won’t be able to give care to or support our LOs.  Our mental and physical health is extremely important too.  We also shouldn’t kick ourselves when we’re down…calling ourselves selfish and all.   We often care so much more for others than ourselves.  That’s not ok. 

I hope you will take the time you need. Your sis may not want “tired, resentful” you there and will understand your needs to get away a bit. Good luck!

I’m kinda being my own cheering section while writing this.  Maybe I won’t cry today.

Nerdyblond

Hi Dawn of a New Day,

I understand:

I care for my mom full time plus work anywhere from 30-40 hours a week. I get very little help that I do not have to pay for. My sister in Washington is the only one, and you can only do so much from out of state. My mom is not quite bad yet but bad enough that she needs to go into a home. I am not close with my mom, but since no one else can or will be here I am doing it. 

I used to be more on top of mom's needs but I am at the point where I check her BP, make sure she eats at least twice a day, take her to her doctor appointments and maybe take her out of the house once in a while. Other than that, I stay in my room and cope by reading, crocheting, sketching, writing, catching up on paperwork for my business, basically anything to avoid her, because she makes me mad. 

I do not want to do this anymore, emotionally, I can't.

Is this selfish of me? Maybe. But it is a clear understanding of my limitations. In your case, you do a LOT and you cannot say you're being selfish unless you actually said, "No, I don't want to." from the start. You didn't. You considered your mom and your sister. 

SEM_BOS

I don't have any  advice that wasn't already said above, but am in a somewhat similar situation. You are not selfish at all. Your feelings are natural.    My thoughts are with  you.

DawnOfANewDay

Thank you for everyone's responses.  

My mom and I took care of my grandfather for over 5 years when I was in my early 20s.  My mom and I had numerous talks about how we never wanted anyone to do for us what we did for my grandfather.  It was a miserable and difficult existance, and made more so by my young age.  

My mom and I talked all the time about how she never wanted her children to have to care for her in that way, and I agreed with her.  I knew how it effected  your mental health and robbed you of a life. Unfortunately, my mom was never in a position to save enough money to provide for these years.  

Quilting brings calm

Does your sister work outside the home? Does she remotely work while at home?   If you only have a caregiver for 4 hours two days a week, what happens the other  hours on those two days? 

Truthfully I think you are bending over backwards to accommodate your sister.  You are handling all most of your moms outside needs, handling all her financial and other paperwork, contributing financially, and then spending a minimum of 20+ hours a week there, plus the drive time, and working yourself.  Your sister is getting the house in return for her efforts.  You are not. 

Unless your sister is working on Tuesday and Thursday,  please cut those down to either 4 hours each of the two days or 8 hours on one of the days. Try to schedule all appointments on the same day of the week.  It’s nice that you are trying to cover your sister’s volunteer time, but I don’t see anyone covering you so that you can do any yourself.  You are just as important as your sister. 

Take a vacation with your spouse. Your sister will just have to cover for that week.  You are approaching burnout.  Is your sister?  

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DawnOfANewDay

Sister doesn't work and she and my mom live off of my mom's retirement and SS.  

I think I will talk to her about cutting down a little bit.  

jfkoc

Stomp away... we get it!!!!

DawnOfANewDay

Thank you!

Stomp, stomp stomp!!

ButterflyWings

Dawn, you are extremely thoughtful, generous and self sacrificing as far as I can see. That is the opposite of selfish, though I was taught long ago that considering yourself at least equal to others (aka being more self-ish) is not a bad thing.

I wonder if you imagined what could happen if you stopped subsidizing so much monetarily for example. A true view of their household income could make mom eligible for many more discounts, services and supports —many free for disabled seniors which she is. Since Sis can’t also work full time you should not be the automatic answer for everything else. 

 No wonder you are burnt out! And you + mom did not want this arrangement. So, it makes sense to separate your income and labor from this to get a true picture of her needs and find other options. You are heavy lifting! Doing the work of a whole village with the thought that sis is doing more. It doesn’t add up that way if you take a step back and do the math as we are able to do here. 

 Agency on Aging found many helps and we accepted some but not all would work for DH:

• Home delivered meals (a week’s worth, prepped & frozen) 
• Monthly grocery delivery from food pantry (produce, canned goods, staples)
• 14, then 30 hrs of paid caregiving weekly. Family member eligible (sister?)
• Assistance with utilities if needed (may be1x, didn’t explore that)
• Respite (up to x # days annually. Will pay for in home or MC as available)
• Repair or retrofitting living space for safety e.g shower chair, rails, etc.
• More like that that I don’t recall & we didn’t need at the time but you understand

DawnOfANewDay

My mother doesn't qualify for any resources in my state because she owns her home and has SS and a small pension.  She is over the limit for any assistance. 

DawnOfANewDay

IDK.  Here is the start of another week and already I am overwhelmed and trying to move things around/postpone things.

I would really like to see my son this week, but I don't know if I can make it happen. 

I get so angry that I have to not see my son because my mom needs my care.