Is anyone here a disabled child of a declining parent?
I'm curious if anyone here is disabled, but also take on a caregiver role of their parent and can only do so much due to their own limitations.
I really feel at my wits end and quite frankly we both need individual care taking for different issues. For the past few years I feel like I sacrifice my own needs, doing all the housework, cooking, pet care, being the emotional support but don't get anything in return to help me.
It goes so far as my parent threatening suicide if I leave her but also threatening me with homelessness if there's any disagreements or things aren't her way.
I attend personal therapy to help not only deal with the struggle of disability but also the stress of our relationship and my own personal things that are unrelated to caregiving.
I feel alone and unheard and would appreciate people who are in or have been in similar situations to provide a little insight or share their experiences.
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I am glad you are going to therapy. Please tell us what your therapist has said about your issues. Does he/she suggest that you move out to make your own way in the world? Or...what?
What is your mother's financial situation? Can she afford in-home help?
Are you her POA/HCPOA? Are there other family members (sibs?) in the picture?
I've never lived independently but at one point and time before things got really bad for me personally and with my mom i had an more independent lifestyle. with the way things are going i will probably end up in supportive housing or group home.
My therapist doesn't suggest moving out alone and is also onboard that living in a supportive environment/living would be best for me. Making your own way, that's subjective. I'm on disability and own a small bushiness, have personal hobbies. Living 100% independently was not in the hand i was dealt and I've accept my limitations a long time ago.
She cannot afford in-home help nor do i believe she wants it from anyone else. That's not really feasible as i'm my own person with my own struggles and i'm not qualified.
No POA or HCPOA and family only sees opportunities to take from her but not give back.
She will do for everyone else before herself. I've had heart to heart conversations about prioritizing herself, her home and explaining that she can not be of help or service to anyone else if she isn't fully taken care of but to no avail.
I believe she will serve herself to the grave and everyone will act with love once she's gone but not acknowledge the constant taking.
As far as I'm concerned sibs have tried to make the situation about me or accuse me of taking and making her life worse. But that's mainly due to me being vocal about family issues and being in treatment for things they have done and not wanting much to do with them. I mainly rely on government services or whatever my insurance can help with and try to be there for mom how i can with what i can.
What does this comment mean?
"She will do for everyone else before herself."
She certainly isn't thinking of your needs before hers.
Not everything can be fixed, and it sounds as though this manipulative parent falls under that category. It is very unlikely that she will change, and it IS likely that she will worsen, as may your own condition.
You have an obligation to self caring for yourself, or you can certainly be no help in caregiving and support to others.
I have not recently heard of any caregivers on Forum who are themselves disabled, yet attempting to care for a disabled parent as well. If we have some I am unaware of I hope they will respond to you.
As to threats of suicide there is little to do but hand over the suicide hotline number and turn your Mom over to experts in that field.
Mutual dependency is one of the most difficult situations to deal with on a daily living basis. When it is family there is an unhealthy enmeshment that makes all things worse.
I wish you the very best and am so sorry for your situation. It must feel very intolerable and depressing for you on a daily basis. I hope you will find help.
It is beyond your capabilities to care for your Mom, you have said so.
It would be a good thing for you to find a suitable supportive housing environment. At least there is hope for you.
Sacrificing the world's disabled to care for abusive elderly is not an acceptable path. Caregiving is hard, requires your own health to be strong.
I don't want to see you hurt one moment longer!
Add in that you need help yourself that is more than you alone should handle.
Get a caregiver. Split the cost you and your mom paying for the caregiver.
You do not go into your circumstances, your age or your disability or your mom's age and how much help she needs. Are you working? Retired? On disability?
Look into a variety of ways that could help get caregivers in to help out. Local Area Agency on Aging, mom may qualify for a caregiver, you may as well depending on circumstances.
Is mom a Veteran? Was she / is she married to a Veteran? If so she may qualify for help through the VA (she wouldn't if she were divorced)
Bottom line is NO ONE can do this all by themselves 24/7 365 without help.
Another option but it does not sound like mom would agree but...Both of you moving into Assisted Living might be what you both need for the help you would get.
I'm also a senior in age.
My Mom was bedbound, almost blind. She was partially paralyzed. Double incontinent, etc... multiple strokes, brain issues.
Am an only child. Took care of my Mom by myself. No days off, ever.
That's all over with now because she passed away last year.
I did as best as I could and loved her very much. But, it was very hard physically on me. But, I got through it somehow.
The tips and support I received on this site were very helpful to me.
You're not alone in your struggles ... even though it may seem like that sometimes. My best advice is for you to try and figure out some ways to have a day or even half a day off sometimes - if your Mom can afford it. Use her funds if she has them.
The hardest part for us was the cost of incontinent supplies. They eat up all the money. We called the Area Agency of Aging and was able to get some donated supplies each month for several months. That was majorly helpful - almost a miracle to me.
We were able to get a Hoyer Lift to help me with lifting her to change her sheets. We used a Medical Transport Company to transport her to Specialists. Expensive, though. And we found a local Doctor to come to the house for check-ups.
Take some quiet time each day to relax, read, watch TV, talk to friends on the phone, etc. You can do this while she is napping/resting. Always focus on a goal - and something you want to achieve in the future. Work on mini-goals while you are so busy and homebound as a Caregiver now.
It is very hard without support & that is why this site is here - to assist you. You are not alone in this.
I currently get SNAP food assistance and contribute to the home in its entirety for food. that gets tiring too because sometimes i dont want to even cook for myself. just dont have the energy but she enjoys anything i make for her and im not a bad cook either. She also still works and ive been pushing her to tone it down a bit too because she can forget where she's driving to or where she's at sometimes. shes always had a workaholic type of thing going on. has used work to be a way to escape hard stuff, her hurt in her life. ive tried setting up family therapy but she's unwilling to attend. realistically i only see the situation continuing to decline. ill be okay to make things happen for myself how i can. ive learned to adapt to this i can handle anything life throws at me even if i dont think its possible at the time.
She displays alot of the early stages that were noticably the same as my grandma whos passed and granpa who is heading toward late stage. recently she misplaced her medications and insinuated i must have done something with them until later she found them with her things that weren't tidy. we've had alot of baggage as a family and there's nothing i want more than for us to have a healthy relationship before theres no way to have one anymore. I also don't want her going through this process angry. not at herself, me, family. just gracefully.
i will continue to practice self care and maybe its time for a different approach. no one should suffer, lets both thrive!
And just curious do you have anyone that you can trust that would be willing to speak for you if you were unable to do so yourself? (can't be mom if she is diagnosed with dementia she can not make informed decisions for you)
There may come a point when it is no longer safe for you to care for her at home.
That could be HER safety
That could mean YOUR safety.
If something happened to you while trying to help her where would that leave you? And I am sure you do not want mom to get hurt while you are helping her.
And FYI
If you fall, if mom falls call 911 and ask for a LIFT ASSIST.
In most cases if there is no transport to the hospital there is no charge.
You will have to sign a release if there is no transport but they can not "force" you to go to the hospital.
If you were to change your life, to move into group supported housing, your Mother will need new supportive accomodation also. While she may not agree or understand, may want to stay in her home just as she is, this does not mean she is ABLE to.
I think having some professional help will help you: to get from where you are, towards the next phase.
I have disabled relatives that I suppose could be described as somewhere between supportive & co-dependant. I would guess it is beyond their skill (& mine) to re-home each without professional advice (to find out the options, funding, arrange legal & other paperwork).
I have had case workers and social workers for myself in the past. unfortunately the services where i live arent very helpful to the point that it frustrates my therapist, psychiatrist, pcp too. I've tried to get set up numerous times at different places but they're determined to make me only work within their system and don't care about what specifically works for me. what i mean by that is they wont give me services unless i switch all my providers. i've spent alot of my youth struggling because i didnt have the right people involved in my care an now im doing better than ever. ive gone as far as taking dna test for medications that my current providers strictly follow and spending 7-8 hours in a diagnostic center for a thorough evaluation of what im currently capable of and what i will need assistance with and rehabilitation for. it's very frustrating when others try to make it one way or no way.
The circumstance:
* The situation is no longer working for you.
* The household or care needs of your elder are getting too high.
* The elder is wanting only you. (Not 'outsiders'. Due to ??? Habbit, control, anxiety, trust issues/fear of strangers).
This is a very common occurrence on this forum.
But this is what I see. You will BE all the solutions until you step back. Until you say no.
Your elder has the right to care - but they do NOT have the right to insist it is done ONLY by you.
They will have to ACCEPT other help.
To ACCEPT CHANGE.
Everybody has their limit. Every caregiver has their limit.
Every caregiver is an individual. Limits will vary.
Many factors will influence the limit. Their own health limits of course, their other commitments, work, study, family. Their own life goals too.
You have the right to say no.
"It goes so far as my parent threatening suicide if I leave her".
This is emotional blackmail. It is a play at manipulation. It will keep being said as long as it works.
Personally I would take all threats seriously. I would report this behaviour immediately to the Doctor &/or a mental health emergency helpline. Pulling that card comes with BIG consequences in my book.
I would contact a Social Worker or a Primary Care Physician. There are all kinds of services that are included with your health insurance.
You do not have to do this alone. You just need more information of what "your" options along with your mother's options depending upon what the Primary Care Physician recommends after an assessment.
There are also some wonderful Adult Day Respite programs. It's more convenient to find one in the neighborhood. Some offer transportation, continental breakfast, hot lunch, also with a co-pay Speech Therapy, Occupational Therapy and Physical Therapy. The Medical models include a full-time RN on duty for blood pressures, etc.
A girl's gotta get out. You need to find a "happy place". Could be the YWCA pool, Church, walking club, etc. You can't blackmail each other or scare one another, you don't do this, than I will do that. Don't do that to yourself.
Buy a bunch of flowers each week from the market and put them on the table. Don't watch any junk on tv. Create a positive environment.
Call on the troops--meal service, someone to clean, Church people to visit on a Sunday. Widen your circle, buy a bottle of perfume. Make gradual changes and you would be amazed what happens.
You are in my prayers!
Thank you for the wonderful response to PaddyCarrier. I was starting to type the same thing. There is no reason for this to suffer alone.
I wish you had some family to step in until arrangements are set up with other caregivers. Reach out to your church for some temporary relief.
Praying for quick relief. Keep us posted.
Sister takes care of mom’s ADLs. The money this saves in level of care is just a little less than the extra expense of the extra bedroom. The apartment feels large and roomy. Sister does NOT have to handle the IADLs anymore. Good food is provided, and an aide can take mom for meals and activities, though they mostly attend these together. It has really lightened sister’s load. No house chores! Medical care is on-site, and there is always someone nearby to help if there is a problem.
Best thing though— sister can qualify for a Medicaid bed there after two years, and can stay there the rest of her life. There is NO WAY she could have been a self-pay for two years at this facility without this opportunity. I really hope they can make this work.
This is not for everyone, but there are evidently five other mother/daughter combos living in the facility as well, so it is becoming a more common solution than I knew. Honestly, it is not something I would have thought of on my own—it was suggested by a facility while I looked for one for mom.
This facility is one of just a couple Medicaid-eligible facilities in our town that accepts residents under 65. Know that there are some out there!
I have very thoughtful remote family who support my efforts to help my mother with her bipolar and nasty behavior who nearly destroyed me. I got therapy and diagnosed at age 58 in 2013 from my late mother's problems and my inability to find good work after I got laid off from the year before. I had POA for my mother and helped her for just over one year when I had to turn responsibilities over to my brother when it became too much for me to handle myself, and I had to seek new employment.
PaddyCarrier, you are doing the right thing getting therapy for yourself. Your mother's problems are not yours, so it's not about you. You take care of yourself, first, before you get hurt. Do you both own your property together? Because it's hard when you both depend financially on each other.
When you look up the OP the Whoops Kitten pops up.
I suggest for older posts we look to see if there is really an OP involved.
No seriously, it's just that some (very rarely) things are good to point out for the poster. Really, trust me. The person will improve at least some important things. This thing "me and X" is really a very important detail. One shouldn't speak, write like that. It's just very wrong, impolite. It's the same for every language, in every continent. Considered very impolite.
Rest assured, you are not alone! I am also in almost the same situation, and frankly, it's wearing me down. I have recently (I think I have been on this site in the past) rejoined, but for my situation, some of the suggestions like respite care are great, but our finances can't support it. My parent refuses to go to Adult Day Care (even though it's free and available) or the library, or shopping for fun and inexpensive stuff...anything that she might want to do. I ask her at least once a week if there's anything she wants. 99% of the time the answer is "nothing". Yet, if I go ahead and do something, I am "getting my needs met."
She had told me straight to my face that I'm a B***h. She has told me to F***off. She says I make her say these things to me. As a former healthcare worker, I know what will happen to her in an ACLF. I worked in one. Sometimes there are true gems in these facilities who can endure the work, but sometimes, these places hire people who really don't care too much about communicating or caring the for the patients. I know the responses she would receive if she treated them like she does to me. They would Hurt Her.
This obviously will not be a pleasant solution for her, but as my family doesn't really support me, I feel like some decisions will need to be made, by me, as her main POA.
Please know that you are not alone in your struggles. Some of us are leading private lives that nobody will acknowledge.