I am one of the 3 caregivers at home taking care of our mom who suffers from stage 4 CKD.
My BF and I have been separated for a year due to Covid. At home, my siblings and I are extremely protective of mom and don't want to run the risk of passing on anything to her. When my BF and I reconnected back this summer, I certainly noticed that we are not as closed as we were last year. Time may have drifted us apart a little. He has been very patient and asking me to stay with him but I always hesitate as I always feel I feeel selfish and guilty of leaving the duty to caring for mom with brother and sister at home. However I also know that he will not wait around forever.
Mom needs 24/7 care, whether it is going up or down the stairs, going to the bathroom, get change and shower...and part of this is due to we allowing her to be dependent in us since dad's passing beginning of last year. We have not let her learn to adapt and be independent as much as she can...for example, using a walker or wearing adult diapers at night, etc... and mom is very stubborn and sometimes I question whether she realized we are putting our lives on hold for her.
My brother and sister do not get along and always pick fights at each other. I know all of us are stressed and want our live back but the issue is we do not discuss things or option at home. Other than giving mom all the supports she needs, the support need at our level almost do not exist. It is unspoken rule that mom comes first and we have to put our live in hold. My brother who has witness the passing of my dad at the hospital is especially vulnerable and stress out. He has aged a lot just over a year.
Since dad's passing, I realized that life is short and passes by us very quickly. I love my mom and want to provide support to my brother but at the sametime I want to start my life with my BF.
If it is not because of Covid situation, I think I can stay with my BF alternate week and come home to give my brother and sister a little help and break. However with Covid, I have to choose to be either with mom or BF.
I really don't know what to do. My heart is with my BF but I don't want my family to hate me and I don't want to feel regret of not doing more for mom in the future.

Iy feally sounds to me that as a family you have your priorities somewhat skewed.

Children, like fledgling birds, are meant to leave the nest and establish their own family units. Supplying short term help in a crisis is one thing, but giving up your life and livelihood to give mom total care long term is unsustainable, in my world view.

I don't doubt that your siblings are cranky!!

Your parents had a lifetime to plsn for their old age and ill-health. Which of you has POA and access to mom's finances to see what sort of in-home help or Assisted Living facility mom can budget for?

This isn't just about getting back with your BF. This is about living your life.
Helpful Answer (16)
Reply to BarbBrooklyn

This may be starting something you don't want to hear--but have you not all been vaccinated for COVID?

My entire family has been. Maybe 12 of a group of 40+ had covid and recovered, thank goodness, and the rest of us were vaccinated as soon as possible.

Once vaccinated, there is still a slight risk of catching a variant of the original covid, or even the original...

BUT--how long are you going to isolate to protect mom? And how long are you going to put your life on hold for her?

You have quite a few people caring for mom. If it's covid you're worried about, then bringing in more CG's just increases the possibity of bringing in more chances of infection.

I wouldn't move in with BF either. Find a small studio apt or whatever works for you to have some space and independence and start over. You can still be a part of CG for more, but more on your terms than hers.

Good Luck.

At some point you must fish or cut bait.
Helpful Answer (11)
Reply to Midkid58

FeelingLost, you wrote this in February, 2021:

"The challenge for my situation is that mom won't want anyone to care or help her other than her children. Mom always say she feels bad that we have to take care of her 24/7 but at the same time I don't see her accept any solutions to help eliviate be some of these.. as simple as wearing a diaper at night so that we all can help a proper sleep at night. Instead she would get mad at us and said she doesn't need help and will go to washroom on her own... Which ended up no one can sleep with piece of mind not worrying that she will fall without any help.
Late 2019 I sold my condo and moved into my parents house temporarily while looking to buy a new place. Then unexpectedly dad passed away followed by Covid outbreaks. My stay at home is much longer than I have planned for and now I feel stuck.
Since dad's passing, mom who suffered from CKD is getting weaker as she aged - she is 85. My brother is a very filial son and very controlling and protective person. In my opinion, he over cared for my mom. He will follow my mom around 24/7, afraid she will fall (which mom also refuses to use a walker or cane to support her) or being alone. By doing so, mom started to depend and rely on us more and more, even for things she is capable of doing. My brother expects us to do the same extend for mom. My sister will stay up all night to help mom in and out of bed to use the washroom and on average mom gets up every 2-3 hours throughout the night. And I am responsible for helping her change in the morning and at night, shower and soak her feet nightly. I am also taking care of vacuuming and mopping and doing laundry. Tension among my brother, sister and I are getting worse these days as my brother is stressing out and will let out his frustration at my sister and me.
I am the only one working and to be honest, I don't think I can commit to what my siblings are doing for mom. I love my mom is no less than my siblings but I believe in balance. We are in our early 50s and we need a life too before things passes by us.
I have a boyfriend but due to Covid situation, my mom and siblings are giving me the pressure that spending time with him, I may run the risk of contacting the virus and passing to mom. We have not spent time since last September. While he understands my family situation, I am not sure how long will our relationship be able to sustain. I am frustrated and torn inside. Don't know what to do.
A few years ago, I have suggested that we get a caregiver to come visit and take care of dad or a helper to take care of house work but all these are shut down by mom.
Once Covid is behind us, we need a solution. I really cannot commit to staying at home and taking care of mom 24/7 like my brother and sister do. This is not how I want to remember spending time with mom."

Caregiving only works if it works for ALL parties incolved (hat tip to Beatty who came up with that). This is NOT working out for you. Your brother in particular seems to be DISabling mom.

Your mother is endangering you all, physically and financially. Won't use a walker? She may well take one of you down in a fall, injuring you permanently. Will you and your silblings ever be able to retire?

Is your mother's inability to appreciate that she is wrecking your lives perhaps due to some cognitive decline?

I assume you've all had your vaccines by now and need to move back into the world.

If your siblings won't agree that mom needs more and better help than 3 worn out resentful middle-aged children, so be it. If you leave, they will realize the truth that much faster.
Helpful Answer (10)
Reply to BarbBrooklyn
BurntCaregiver Aug 2, 2021
Well said, BarbBrooklyn.

Everyone concerned needs to be realizing the truth. Including the mother.
Her resentful, middle-aged children who are expected to take care of her round the clock need to stop enabling her vanity that her kids want to give up their lives to be in service to her.
Feelinglost122 needs to go and her siblings will work something else out for mom.
Time to move out. When u moved in, it was not permanent, COVID put a wrench in that. Don't move in with BF. Sometimes being apart does not make the heart grow fonder. You may have to take time to know each other. You cannot go home and live with ur siblings again. We change.

Call Office of Aging and ask if Mom can be evaluated. Her house too. Or call her doctor and ask if he can OK PT/OT for Mom to see what she is and is not capable of.

If Mom has money, use it to get help in. If she has no money, see if O of A has aides or sign Mom up for in home Medicaid. Tell ur siblings if they want to sacrifice their lives then they can but u aren't. You will be there to help. Give them a break but you can no longer live in this situation. Mom's care is going to be more and more because she is not willing to do things to make it easier on her kids. She needs you more than you need her.
Helpful Answer (9)
Reply to JoAnn29

Where is your own home? I ask because having read your post I think you should aim for two particular changes:

1. Get your mother a bedside commode for night-time toileting.
2. Move out, but not straight into your b/f's home and not on a half-and-half basis.

What you need first is to be a free agent. Then you can make a real choice when it comes to how you allocate your time.
Helpful Answer (9)
Reply to Countrymouse

My opinion… don’t go down this road.
Caregiving is difficult. It will impact you both negatively and positively. how long before you become resentful, 1year, 3?, 5?look down the road and visualize….

I’m retired. When my in laws started to need help in home… I could see the writing on the wall. SIL was quite verbal that we give up our retirement to care give. BIL was a sly dog, tells me that not his goal… then separates DH for walk and talks… (consisted MO in other family matters). He was after inheritance. We are talking 4-5 thousand dollars… each… long story short , I fought tooth and nail for my retirement… I know it’s not my family but it is my retirement…I didn’t work 45 plus years to do that.
Helpful Answer (7)
Reply to babsjvd

You are not selfish for not wanting to continue as a full-time caregiver. You are not obligated. You are not responsible for your mother (or brother or sister's) happiness. No one should assume another person into a life of caregiving.

You can make your exit less dramatic if you plan it well. If you solve some of the questions, concerns, fears and anxieties that your family will have, it will make things smoother (but probably not perfect). A wise thing to start with is to encourage your mother to get all her legal ducks in a row. This would mean investing in a consultation with an elder law attorney/estate planner/Medicaid planner. Hearing info from a professional 3rd party will help her see that how the care arrangement is "working" now is probably not sustainable much longer, financially or otherwise. She needs to assign durable PoAs if she hasn't already done this (and it is essential for the management of her future care, if she wishes to remain in control even when she is no longer able). She needs to create a Healthcare Directive (her Living Will) and maybe even a Last Will (less important if she has few assets). She can't afford to not get these legal protections in place. At this appointment you will probably get an idea of what her total assets really are, and therefore what she's able to afford if all siblings stop providing care (and no one other than your mom should be paying for any of it -- it is an unsustainable and punishing strategy to allow others to pay for any of her care).

Your mom may need to move into AL or LTC in a care community. Some states' Medicaid pays for some or all of AL cost, but the lawyer would know. In a facility she will be well protected and have a social outlet other than her children. Many good facilities have planned events, programs, clubs. Do a lot of research on what her realistic options are, then you can present the best replacement solution to your siblings first, then your mom after you and your siblings are on the same page. It may be one or both of them will not be happy with your plan. That is THEIR problem, not yours. Just don't leave them "holding the bag" as that will surely create ill will into the future. Change is often stressful and scary to people who can't see the solutions. Of course you are not obligated to go through all this effort but if you don't you will be dealing with the emotional fall-out from your family into the future. I wish you much success in getting your life back and hope your family sees the ultimate wisdom in it. May you gain peace in your heart no matter how they choose to react.
Helpful Answer (7)
Reply to Geaton777

You are not selfish to want to pursue your life. People electing to have children have a responsibility to give those children the tools to meet life head on - (it goes without saying to the parents best ability to teach and the childrens best ability to learn). At some point parents should shove the children out of the nest to fly on their own - of course life happens but that should be the goal.

Children, on the other hand do not have the responsibility to take care of the parent. I don't mean to sound heartless - but the child should not give up their life to care for the parent. I don't believe in abandoning one's parent - just not 24/7/365. So if this is the relationship you want to pursue, then do it.

My mom is 88 years old and I recently moved her from AL to IL. She was in AL because of dad. Dad died 2 years ago. Tried to move mom within a year of dad's death but she wasn't ready. I was talking to care communities closer to me and one mentioned that mom would probably qualify for IL based on her needs which helps $ wise. After being locked down from COVID she couldn't move out of the old place fast enough.

We were both cautious about her going to IL but what she needed was help with meds and laundry. Well the meds got solved - got one of those pill containers for 31 days with 4 spaces (AM noon PM bed) and an alarm system. So far that has worked. The place she moved to has stackable washer and dryer - small - not as much bending - stressing her back. She only gets 2 meals during the week breakfast and dinner M-F; lunch Sat and brunch Sun. She still doesn't have to cook. The biggest stumbling block so far is the phone - she elected for a cell phone but is having trouble getting the hang of it. May have to go and get her a land line.

So I've set up her meds - oops forgot new month - but mom managed to get a couple days set up for herself and thankfully I'm back to taking her to med appts. - COVID was frustrating because I was more in the dark. So I'll probably be more hands on than I was but the facility also partners with in-home aids so there is that option. Keeping fingers crossed that this works out for however long she has. She has MCI which she thinks is worse since the pandemic, but I'm not really seeing it.

So maybe you and siblings can work out a system where you step in maybe do her weekly shopping or taking her to dr appts. Its also a good time for all of you to reassess how to care for mom in the future.

Wish you much luck.
Helpful Answer (4)
Reply to cweissp

Your concern is that BF could introduce the possibility of Covid.

As a Medical Reserve Corp volunteer working the county vaccine center, my take on Covid is that the vaccination is a deterrent, masking is a deterrent, sanitizers are a deterrent and avoiding spreader events makes sense so doing those things puts the odds in my favor for not getting Covid. The delta variant adds a new level of concern, especially if the vaccines efficacy drops after 6 months but I accept I can’t control the universe and I wouldn’t accept guilt trips about who’s worthy (mom) and who’s not (you).

Is BF vaccinated?
Does BF wear a mask?
Does BF avoid social gathering “spreader events“?
Is BF at a job that exposes him to Covid spreaders?

For that matter, the same questions apply to you and the siblings.

If BF is taking precautions, grab the brass ring…. Though maybe it will be a diamond…

Meanwhile Mom’s in stage 4 CKD & could live a decade so it’s unreasonable of her to play the invalid at her children’s expense. Tell mom it’s time to go to assisted living. I watched a relative lose her life to a demanding mother who guilted her out of happiness.
Helpful Answer (3)
Reply to Erikka

First - If not already - get vaccinated and urge BF to also! Second - do not put your life on hold. A good mom & loving siblings would not want you to do that. You can be with BF and still help out as needed with mom. Use common sense (mask up/sanitize/avoid spreader events). Do what you can, but if mom needs more than you can provide, do not hesitate to explore other options like assisted or home health aides who come in as needed. Statistics have shown that over 50% of caregivers will die before the person they are caring for. I willingly took on care of my mom, but told both out of state sibs that my health and welfare come first. I won't kill myself caring for her. I'm 63 & work full time- she is 87. I count her as my 2nd job as I usually spend about 35 hours a week caring for her in the evenings & weekends. She has funds that pay for a caregiver for 5 hours during the day. If she is still around when I retire, I will place her in a home.
Helpful Answer (3)
Reply to Lindam1958

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