I feel like my life has been stolen from me. I didn't have a choice but to quit working and move my mom in with me and my family.
Last fall, my son moved an hour away to college and now I don't get to see him very often, even though he and I are very close. It's not fair that I can't spend time with MY SON!
My husband is carrying the burden of supporting the family because there's no way I can work right now. Even though he makes good money, the economy has tanked and now we're struggling . I know he's tired of our home being a nursing home. I know he's tired of living his life around his MIL!
I'm at home all day doing literally everything for her, cleaning up after her chronic diarrhea and nausea- never ending laundry! She has mild dementia which makes everything worse. She is also on dialysis, which means driving 20 min one way, there and back, twice a day, 3x a week. Throw in the wait time when I pick her up and that's at least 6 hours a week of sitting in a car. Now add the endless dr appt, eye dr appt, hospitalizations, rehabs etc. From April 2022 to Oct 2023, she has had approx 11 hospitalizations and 5 rehab stays. That requires me to be right there with her- if I'm not there at least every other day AND USUALLY MORE, she will have something go wrong. Idk if she does it on purpose or if I'm just quite literally cursed. Did I mention that rehab is over and hour away and usually the hospital stays are over and hour away. Plenty of driving for me in mom's granny car...
Last fall, my car's timing chain broke and it would be thousands to fix and everyone tells me I need to take it to the Cadillac dealer... Can't afford that when I'm not working so now I don't have a car at all. I'm driving mom's therefore I refuse to use it except when needed for her.
I don't get to leave, I don't get to go see my son, I can't go out with my husband, I can't do anything.
I am not just burnt out, I am absolutely crispy at this point. I feel so much resentment towards her which only makes me feel guilty. I'm in my 40s and feel like I'm older than she is. I'm missing living MY life!
My sister comes most Fridays and drives her to dialysis and picks her up. I, of course, still get mom ready, give her meds, feed her etc. It's only been 2 weekends that my sister has taken my mom to her house to give me a chance to breathe and that was only after I had a meltdown. Now my sister will text on a Sat, late morning, and say "Should I come get her?" Meanwhile, my mom is glaring at me not wanting to go. So, whose shoulders does it fall on? Mine. Therefore, no, forget it, she can sit here. I don't need more guilt piled on me.
I'm absolutely at the end of my rope. I'm having anxiety, crying sessions, and even at the point I'm not sure I want to continue life as it is. No, I'm not suicidal, just overwhelmingly tired of it.
Husband doesn't understand and gets mad. Can't fault him for that, his life is screwed up now, too. He's been a saint, to be fair.
My sister will be sure to tell everyone she takes mom whenever I want her to, but she's only just now started and has only done it 2x. She's always been the benevolent favorite, although I'm always the one doing for everyone. I love her dearly, but now I'm becoming resentful of her. She hurt her foot this spring and I've had to mow her yard, take her to the dr, cook for her and it's only been the past month that she's recovered enough to take care of everything herself.
My life absolutely sucks. I miss seeing my only child. I miss being a woman and dressing nice. I miss laughing and freedom.
I love my mom and want the best for her but I am tired.
She doesn't have Medicaid so there's no help offered by anyone in my state that I can find.
I guess I'm just venting before I take her to the hospital, same as I did Monday last week for the same reason.
I'm so tired.
First, driving there and waiting and driving back. Every dialysis unit has a social worker, and part of their job is to work on transportation assistance. I don’t know the details in your area, but people come in wheelchairs via medical van, get dialyzed, and return the same way, without family. I would reach out to the unit social worker to see if there’s any option for this.
Second, without saying anything about the quality of your mom’s life: All medical treatments have benefits, but also burdens. If the overall burdens exceed the benefits, it’s reasonable to pass on the treatments. It is acceptable – even common – for people to decide that though continuing on dialysis gets them somewhere, it’s not anywhere they want to go, and therefore stop. This is no different than saying “I think I’m not interested in another round of chemo” or “no thanks on that surgery“.
I guess bottom line is you have to know yourself, what your limits are, take a hard honest look at how it will impact you and your family, and make a decision based on that or you'll compromise your own health, relationships with other family members, and resent your mom.
Now it's time for you to chose another way. Your mother is very ill and sounds like she needs nursing care.
You and your sister need to find her a care facility that can meet her needs.
If she doesn't qualify for Medicaid she soon will after any assets she has are spent-down. A nursing home will accept her even if she's not on Medicaid yet.
After she is placed you can go back to work and start earning again. You can resume living your life again and seeing your son.
Please look into placement for her.
Vent away, you need it!
All the replies from before have some great advice, so I won't repeat it - except yes - it's time Mom gets professional help and gets moved out - But you definitely need to have time to yourself to live your life.
I feel like you are an extremely giving, supportive, pillar of strength in your family, and have trouble saying no (or step up too much). I understand this all too well - to the point I would physically get ill when I felt too "needed" by family members.
You NEED a break. Please reach out to all extended family and/or family acquaintances to step up so you can step down for a little while. Enforce it. You need a break and some clarity, and when you're too exhausted and burnt out like this, your own health will suffer.
I know it's easier to just go along, but please do this for yourself. Please. <3
Engage with your sister and husband and anyone else to decide to look at assisted or long-term care facilities that can help your mother. Then speak to your Mom and tell her what you are thinking for her continued care. Be honest with her. Frame it in the form of her recovery/rehabilitation, so she can live independently again. Your Mom doesn't want to be a burden to you or anyone else. Ask your sister to come care for her and you go visit your son for a weekend.
This may sound terrible to some, but you deserve to live your life now. Your mother lived hers, enjoyed her life with her husband, watched her children grow, and even enjoyed being with her grandchildren. It is your time now and you deserve it. Take time to recharge your batteries and also connect with your husband. Nowhere is it written that you have to give up your life indefinitely.
kidney failure… as a doctor/friend told me… it’s basically a bandaid.
ASK FOR HOSPICE EVALUATION…
be open to your SISTER AND FAMIKY….
WHY??? THIS IS WHERE HOSPICE COMES IN…
Even with dialysis , what is her ( mom’s, sister, family, loved ones) QUALITY (not quantity) of life?
Have you had this discussion with her and family? IT’s very hard…
And it is life changing…
as far as your kid is concerned, thank the heavens he is only an hours drive away…. This is a natural occurrence….
Thank goodness he is this close… I cannot imagine if my kid went out of state like most kids that age want to do…
my kid is only an hour away…
my neighbor sees her child more than I see mine, and that child is attending a school 2 hours away by plane…
so, take your kid out if this equation… he is doing what he’s supposed to do… grow up to be an intelligent understanding, loving independent adult. He will be ok…. It’s his time to grow up… and he is close…he loves you and his family… he needs to be in school.. it’s ok.. he has a safe landing if he needs it… you…
then kindly suggest your sister to remove all lawn and put in a nice meditative Rock Garden.
better for environment since it is always DRAUGHT TIME, and rocks and mulch don’t need much attention….
shoot, you can add some recyclable pieces into the groundwork.. old cardboard etc.. sure Home Depot or lowes or your close to home gardening supply store has ideas..
Use time as your ally. When mom is in rehab or the hospital, the staff are responsible for her care, not you. Use those times to recharge your batteries and live your life. Use the time she is in dialysis - a couple of hours 3 times a week - to do something for yourself.
The doctor is your ally too. Ask her doctor about what she can have for nausea and diarrhea - and journal/document when you give her those meds (so you can stay on top of these problems). Ask about medications for her dementia, mood swings/outbursts.
Work hard to create a schedule that works for your mom. your family, and most of all - you! You have family (sister) that will help, make her time with mom into regular appointments on your WEEKLY calendar. If mom fusses, let her - but make her go. Use that time she is gone to focus on your family, especially your spouse. Make sure mom is going to bed early enough you have time with your spouse without her.
Get more helpers on your caregiving team. Caregiving is a team sport, Nobody can do it all for very long without help. Anybody who tries the lone ranger act will eventually experience burn out. Ask for help from family, friends, members of your faith community. Ask for those who can do hands-on help with mom as well as those who can help with your tasks (housework, yardwork, laundry, running errands...). Check with your doctor, local hospital, local aging care agency... about services/help for you and your mom.
Your mom will not be happy with this decision, but you have to make the good decisions, because she can't. Losing your job, time with your only child, running yourself into the ground and being miserable is not good for anyone. Find your mom the care she needs so that she can be taken care of and you can get some resemblance of your life back. It will take some effort on your part to get this done, but it will be worth it in the long run.
Contact her primary care physician and ask if there is a social worker who can guide you on getting your mom approved for Medicare and placed in a facility that can meet your moms needs. Meaning a skilled nursing facility that has dialysis capabilities on site. That way no one is running her back and forth.
You haven't mentioned why your mom doesn't qualify for anything. Elder lawyers can guide you on her financial situation, whatever that may be. With a doctors diagnosis and an elder lawyer guiding you on her finances and a social worker helping you find the right facility, you will be moving in the right direction of getting your life back.
Yes! People run their elders all over the place to see their doctors. But how often do the enslaved caregivers go to see their own doctors? Their own doctors should make it clear that their health is being jeopardized. The caregiver should take that and run with it to make changes to their situation. A therapist is a good idea, also, provided the therapist works with the caregiver to change their situation ASAP. We've seen lots of therapists described in this forum who see the patient for years, yet the caregiver doesn't make much progress to changing their situation. Maybe the caregiver needs a life coach?
If the situation was ever looking like I would have to provide a lot more care to my mother, I was going to go to my PCP and then tell all involved (my brothers) that MY doctor said it wouldn't be good for MY health to take on more. caregiving.
Pertaining to your last paragraph …..
Certainly go to your PCP whenever you feel the need. But you can tell all involved that your doctor said not to take on more caregiving whenever you feel you need to say that ( even if you haven’t seen your doctor yet ). Sometimes you need to say therapeutic lies not only to LO we take care of but also to uninvolved family who are clueless and would never understand . Self preservation is important , you matter too .
Sometimes I used to lie to my siblings and parents , when my siblings were coming to visit my parents , because I got tired of everyone expecting me to play host and cook for them . I used to say I wasn’t going to be home . Sometimes I would go somewhere. Other times I just stayed in my house .
Now we tell my FIL with dementia that he can’t leave AL until the doctor says so.
Anything that we suggest will take effort from you. There is no magic pill that will make your life easier. Even if your Mom were to die tomorrow, the immense amount of work that you will have to do to deal with her death will also seem overwhelming.
Your sister can only help so much. She cannot and probably will not choose to help you take care of Mom much more than she is now. The fact that you ended up taking care of her and Mom, when she was out of commission, tells me that either you volunteer to help people out or that people expect you to just add to your already overflowing plate. Neither is good.
You are a wonderful, caring person, however, your sister and mother are taking advantage of your kindness....and you, are so beaten down, that you don't have the strength to deal with the consequences if you don't go along with their suggestions.
My suggestion is that you go get a full physical from your PCP. My suggestion is also that you find a therapist that can help you get your life sorted out and support you while you get it sorted out. You cannot do it all; you are killing yourself. However, the research needed to find the help that you need to help you take care of your Mom and to keep your sister from breaching your boundaries, is going to take a lot of effort, not to mention the emotional toll, as they try to keep you a captive slave.
If you have to, take your Mom with you when you go see your PCP. She can wait in the waiting room while you take care of you. Don't allow your Mom be the excuse why you cannot go to the doctor to take care of yourself.
I'm assuming that you have told your Mom's PCP about her nausea and chronic diarrhea. Without having all the facts, I suspect the nausea and diarrhea are due to the medication that she takes. If her doctor is like 90% of all the doctors, she has been prescribed medicines to take care of the side effects, instead of just changing the original meds that are responsible for the side effects. However, changing medication is not easy as each has its peculiarities.
Why haven't you looked into Medicaid or some other program to get help to help you with your Mom's need and expenses. Maybe it is too daunting? Yup! that's another reason why you need to see a PCP for your own health.
You need to start somewhere and right now, it appears that you are having a tough time getting started....that is called depression.
I suggest you start with you....go to your PCP and for your mental health, get a referral to see a therapist.
((HUGS))
Try to do one small thing a day that makes you happy. I find it works for me.
I try to suppress my resentment, anger and frustration when I see my parents. But this situation has just gone on too long and I am not sure I even love them any more. When I see them, I only see another problem happening. The parents I knew are gone and replaced with people I don’t recognize and who should have departed this life already. What is left right now are empty shells.
I we'll say I will agree with whoever said hospice evaluation would be appropriate. I honestly look back and I have no idea why I struggled so hard to keep my mother alive just so she could wither away and become dependent and sad, Just so she could live a few years longer and lose all the faculties that gave her joy in life. I am surprised no one has even suggested palliative care options to you yet.
I also agree that all the endless doctor visits and blood work etc was for naught... What a waste of energy and time. My mother has been hospice for a year without blood work or even blood pressure measurements and she's doing just fine (unfortunately because I really wish she would pass before she gets any worse. It's horrible to see her lose our happiness bit by bit).
Anyway just personally if I had to go back I would have not worked so hard to have my mother receive medical services. Even in hospice she keeps going. If she has the ability to understand the consequences of not going on dialysis I would discuss it with her. Just my two cents ... everyone is different.
II wish you will because I am in the same position and you are not alone. I just had a talk with a head nurse at my mother's facility and she told me at max my mother had one year. This was after I expected her to be gone 6 months ago. Sadly that gave me hope though I wish it had been sooner.
I certainly plan to have a plan in place so that no one has to take care of me in the way I had to take care of my mother..
I would sooner jump off a cliff. I wouldn't wish my experience on anyone. Though I admit much good has come of it in terms of my spiritual life and coming to terms with old demons and sweeping out the dark corners of my childhood... I I'm not sure the physical and financial and personal toll is worth it. That said I will make the best of it as I hope you can too. Wishing you well, you are doing an amazing job.
Please get your mother to see her PCP ASAP so the doctor can fill out the forms for your mother and she can get the care immediately. This help from the home health aides will be a big help to you and would help you to see your son and be there for your husband.
Praying for you to find a way to get through this tough time. As a preacher once said, “tough times do not last, but tough people do” and you are tough and you will get through this.
My prayers are with you! I can identify with you to a point. My dad is currently in the hospital but will be discharged in the coming weeks. Everyone on his side of the family expects me to be full time caregiver and I can’t. I have taken care of him since my mom has been gone. Running errands, doctors appointments, groceries, cleaning and washing. He can not live by himself but I can not live with him. He will need help with everything ( bathroom, cleaning himself and bathing) and I'm not mentally or physically able. Please try to get your life back. I have recently started a new job and I will not quit because I have to work. I also have a child out of state. GO SEE YOUR SON! Do not miss out on opportunities with him. Work on getting your mom into a facility. Do your research and ask her doctors questions. Do not let people make you guilty for it because they are more than likely the ones who not lift a finger to help you.
I replied 'YOU are family. That would be great if YOU helped'.
"Me? Oh no, I'm a man". (Yes he said that). Then proceeded to a long list of further excuses for every relative I mentioned.. leaving only me.
Opinionated do-gooders that take no responsibility can go pound sand.
Vent all you want. I did. There are wonderful people on this forum who care.
Caregiving is never easy. Having support is crucial.
Life can be about just getting through a day.
If you can, create some mental space to do so.
Zoom out. What's the longer term view look like?
What are your aims?
What are you Mother's wishes?
Accomodation: Is Mom expected to live alone again?
If not, then where?
Dialysis: What is the aim?
Is it short term until her kidney function is ok? Or will this be ongoing for her life? (I am guessing she is not a transplant candidate).
What are Mom's values surrounding;
- life at all cost
- burdonsome or invasive treatments
- quality of life
At what point does the burden to the caregiver become too much?
The original question was "how do I live like this indefinately?"
I don't know.
But you can make changes.
This one really speaks to me because it feels so familiar.
Anyhow...
Diarrhea - Did it start when something changed? New med? Change in diet? My mom was due to unfermented dairy. She could eat cheese and yogurt without issue. But ice cream?? Watch out cuz here come hours on the throne! Finally figured that one out! So could be food related. Does she wear depends? If not, remove regular underwear and make her wear these pullups. Could be really helpful.
PCPs can be pretty clueless about cognitive decline. And patients can be really good at covering up their symptoms. My mom's cognitive issues were not easy to recognize to anyone outside of my house. I started writing down all the odd things she was doing and things she could no longer do. So her PCP referred us to the doctor around here that everyone goes to for memory issues. I found that the dementia test, etc. don't really cover a lot of the things that my mom has issues with but that doesn't mean they're nothing.
Your mom's on dialysis - how does she feel about this? I'm ignorant on the topic but unless a person gets a transplant, this is something they have to do forever? Does she complain about going or is she the type of person that wants to do everything they can to extend their life even if the quality of life is abysmal?
I would really think about placing her outside of your home. She would probably need a nursing home but the people there would evaluate her to see if it's a good fit or not. Then her money and assets get spent down and when the well starts running dry, you apply for medicaid.
Lastly I agree with other's idea of a hospice eval. She has a LOT going on and if it were me, I would want to focus on my mom being comfortable much more than trying to do everything to improve when that may or may not be possible.
Hope to hear more from you. Best of luck.
So very sorry for your horrible situation - I understand and feel for you:
My mom is 80. Her and my dad moved in 8 years ago when they were in their early 70s and in pretty good health and were going to be traveling, etc. Woohoo! Then dad died and mom started to decline. Oh boy. After 7 years (well probably more like 5!) of dealing with mild cognitive impairment progressing to dementia, I was DONE. She would go to my sister's for a long weekend once a month which was wonderful.
My mom has most of the ailments yours has except no diabetes or dialysis. But I always felt my mom was very old for her age. Horrible mobility. Didn't take care of herself - very overweight and did as little as possible. I forced her to get her cataracts done and replace both her "bone on bone" knees.
When she couldn't clean her room and bathroom, I hired a cleaning lady with her money. Then her care was getting to be too much because I was burning out AND I had grandkids and wanted to help watch them (much more fulfilling than eldercare, IMHO).
Then came the aides. Started small and ended up with 5 days a week. Then finally moved her to AL. Best thing I ever did. I wish that I had NEVER allowed my parents to move in. I was all for it! Ugh, so naive! I don't know what I thought things were going to be like in the long run but that was my ignorance. My 4 grandparents all died in their mid to late 70s so I really wasn't feeling like my parents were in the running to live to 90 but you just never know, right?
OK, now that you know my saga, I have some comments on some of the many things you touched on in your post. I hope that I (and most of the other posters here) can help you. Some advice seems to annoy you. Ignore it and go on to the next post. Take things with a grain of salt - we're all different and there is not one way to think about things.
You quit your job. I'm sure you realize at some level that this was actually a choice. At the time, you probably felt backed into a corner and this was the solution you came up with. Now you are seeing that it's not as good a plan as you had originally thought. We all make mistakes in this caregiving journey. We're unprepared for it and make choices we regret. But mistakes are not a life sentence. You can and should re-evaluate and do what it best for YOU, your husband and your son.
Your son is away at college. You should NOT be missing out on anything you want to be involved in. You should spend time with him when appropriate. You can put your mom into a facility for respite care. You can hire a caregiver through an agency. You need help and you should start finding it ASAP.
You mention so many doctor appointments. My mom used to have a lot too. Doctors would say "come back in 3 months". I'd say WHY?? Everything is stable, she does bloodwork every 3 months that would alert us to many changes that would be noteworthy and why should we come there to say "no changes". Start canceling/postponing appointments unless there's a reason more than it's what the doctor said at the last appointment.
You're burnt out. Get help ASAP. Part time or full time but do it now. You deserve it. The work load, mentally and physically, is waaaay too much. Talk to your sister and ask her to do more now while you guys figure this out. If your mom complains about going to sister's - too bad. Make up some excuse - it can be real or vague but it's going to help you reclaim a tiny bit of your life. Your life and your health are important.
Your car is out of commission and mom's car is there. If it were me, I'd be driving mom's car anytime I needed a car. Don't be stuck without a car when there's one there not being used.
Is your mom's paperwork in order? Do you or sister have POA? Does she have a will, living will, etc.? If not, get it done ASAP.
GI issues - my mom used to have diarrhea on a semi- regular basis. Luckily she was able to take care of it herself and I just had to listen to her descriptions.