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.
Have you talked with mom about dialysis and what not going and stopping it means? She is still not 100% past the point of understanding, right?
If she has no money and no means then she would 100% qualify for medicaid. Sounds like a consultation with an elder care attorney may be in order.
As her dementia progresses a talk will be in order regarding discontinuing dialysis.
And seriously you HAD to mow your sisters yard and cook for her because she hurt her foot? Did I read that correctly? Sister should have hired someone to mow her lawn and she certainly could have microwaved something or made herself a sandwich with an injured ankle. If not she should have hired someone to help her while she recovered. Not everything and everyone is your responsibility.
You obviously have a problem saying no and setting boundaries for yourself. If you don't get help and learn how to do this you will go from caring for mom to caring for your sister too in her old age.
Second, I didn’t quit my job, both for financial and mental health reasons. This was truly my saving grace because it forced mom to accept outside help for the first time, which opened the door for more help over time.
I, too, am resentful, and caring has taken a lot of time away from me and my family. I do recognize now, though, that it was a choice. It didn’t feel that way, as mom always made me feel obligated. But I’m an adult and it WAS my choice. My brother lives close by and chose to do absolutely nothing during crisis after crisis.
I lot of people here say to “place” mom in a NH. I don’t fully understand how one can force someone who hasn’t been declared incompetent to move into AL or a NH. We had to go to court to have my grandmother declared incompetent. If she hadn’t been given heavy duty psych meds to control her violent outbursts she probably would have prevailed.
The only thing you CAN do is step way back, do as others have suggested and the next time she goes to rehab do not allow them to release her back into your home. She will have to use her own money to pay for care. Believe me, I know how moms have a way of making us feel like we have no choice. But we do have a choice.
Reading your post reminds me of the hours I given up, family time I’ve given up, money I’ve spent, work I’ve missed, wear and tear on my car (and gas). I’m putting the brakes on it and hiring 24 hour care (in her home with her $). I’m not giving up any more of my life and time with my family. Mom will be super disappointed and angry, but tbh she’s not overly pleased with what I have done up until now anyway. So why am I killing myself? She doesn’t take any responsibility.
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.
My parents didn’t live with me but I practically lived with them except I came home to shower and sleep . I only worked part time when I should have been working full time and saving more money towards retirement . I put my family and marriage on hold.
Your mother’s needs are more than one person can handle . And I wouldn’t count on your sister . Your Mom glaring at you . Too bad on Mom if you need a break . Don’t let her pull a guilt trip.
You say you want the best for Mom .
The best you can do for Mom is to stay alive to advocate for her . I’m assuming Mom can’t afford 24/7 in home care so you can go back to work , which is what you need to do for your own financial security . Next time Mom lands in the hospital , you tell them you can NO LONGER TAKE CARE OF MOM. Tell them it’s an UNSAFE DISCHARGE. , ( use these words ) no matter how they say they will send help to the home. It will not be enough help . Do not take mom home with you . They will try to talk you into taking her home . The hospital will have to find a nursing home for Mom . Speak to the social worker .
You aren’t any good to your mother , yourself or your family if you are burnt and at the end of your rope. You matter too . Take back your life .
You say you had no choice but to take mom in your home. Now you have no choice and have to place her in a nursing home . Don’t ruin your family life , health , and finances anymore .
(((Hugs)))
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.
Your sister didn't have her live with her, so why did you take her in?
And why did you take care of her sister when she hurt her foot earlier this year? Does everyone in your family expect you to be their caregiver?
Are you ready to make a change?
If her income is too high, some states have Miller Trusts where she can put the overage into for her care needs.
My point is, if you haven't spoken to an attorney yet, please do. You can't go on like this or you'll die before mom, God forbid. Then what? Then another sibling takes over or she gets placed, one way or another.
Stop being everbodys solution in life at your own expense! I can relate to you wanting and needing to help mom, but this has gone too far now. Alternatives must be found. For mow, set a strict schedule with your sister to take mom to dialysis and or appointments 2x a week, minimum. Ask for help.
Best of luck.
You say you don't have a choice.
That isn't true.
You DID have a choice.
You still do.
Let me ask you this?
Where would your Mom be if she had no children?
Right, she would be in the care of the State and in placement in a facility.
You have taken on this care.
Your recognize it is not good for you.
It may well kill you.
Where THEN will Mom be?
You will have to now admit that you cannot do it anymore.
Your Mom will have to go into care.
Her assets will go for her care. Then she will be on Medicaid.
At some point she may make the decision to stop dialysis (It has long been in my advance directive that I would never accept it; I would prefer death).
If she does, then this will be over.
Your note to us serves as warning for those who wish to sacrifice their own lives on the funeral pyre. I am so sorry, but there are choices in this. Not easy choices, but choices nonetheless.
You ask how you can live like this indefinitely. There is no indefinitely with dialysis already on the seen. See to it that advance directives for DNR are already done.
See an elder law attorney about qualifications for Medicaid, and for spend down to Medicaid.
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