I am relaxed and level-headed about what she said, but still hurt and deeply. I am a 37 year old woman that has been taking care of her 74 year old mother for the past 5 years. Well, if you want to be technical about it, I've been taking care of her since my dad died 12 years ago. But for the past 5 years, she has been pretty much wheelchair bound and bedridden.
Let me make this VERY clear, since nobody knows me and I want to really highlight this fact. I do not get paid for taking care of my mom. She makes too much money (which is really not a lot though) and doesn't qualify to have me as in-home support. Nurses come in 2 times a week and a Nurse Assistant gives her a bath 3 times a week. Other than that, NO HELP. I do EVERYTHING. Hoyer lift to wheelchair for Drs. Appointments. I'm there by her side when she's in the hospital. In charge of everything. Food, cooking, cleaning, all me. No help. Her personal needs, shopping, etc. Me, me, me. No help from my brothers. No help from anyone. It is ME. I am honestly terrified of putting my mom in a nursing home and thinking about it seriously consumes me with guilt.
So, tonight, as I'm putting a knee brace on her knee because her knee hurts, she says to me "I can put it on myself". I say, "No, mom, I'll do it." She gets mad, "You don't let me do anything." I say, "Okay, go ahead then." She knows she can't and says nevermind. Then she says "I wouldn't be like this if it weren't for you." I look at her and say "what?" She says "You didn't give me the proper physical therapy."
Now, here's the thing. When she started going downhill, the Dr. did order a physical therapist to come to the house. The physical therapist gave my mom instructions on what to do. Exercises she was supposed to do. She did not do them. She has it in her mind that she needs someone to help her. I try to explain to her that I can't move her limbs for her. I remember the slow downhill regression.
So, anyway, I said to her that I know that she has to have someone to blame and it's okay, she can blame me. But I know that I am not the cause of her condition. It is not my responsibility to be her physical therapist on top of everything else.
Deep down I know this to be true. Where are my brothers? Where is her sister? Where is anyone? It's just me. And I have done my absolute best. None of this is my fault no matter what. None of this is even my brothers' fault that didn't help at all. They all have lives to live. But instead she takes it all out on me.
She's not even a mean person. She can be stubborn and headstrong, but most of the time she's not mean at all. And that's why this hurts. I've done nothing to deserve this and I know that I will never just get an absolute sincere thank you from anyone.
You've given us a lot to think about, but I just wanted to send you a hug in advance of responding.
So... she went for her Doctor's appointment, the Dr. set her up with a neurologist. And 3 months later, (because they're always so booked up), the neurologist ran some tests on her, basically tells her there isn't much he can do for her. Refers her to see a neurosurgeon. A few more months later, neurosurgeon says she may can help since the culprit is my mom has spinal stenosis and it could help her.
During all this back and forth, the Dr. ordered physical therapy for her NUMEROUS times. I can't tell you how many came in and out. A lot. My mom would do the exercises with them, but then completely stopped after they left due to the insurance time running out.
She has also been in nursing homes before as well, where she received physical therapy for up to a month. I remember her doing this 3 times. The one where she had physical therapy for 1 month, also taught me how to take care of her. And that's where she got the best therapy. But still, she did not do the basic exercises. I remember pleading with my mom to do it, and she insisted that I must be there to do it with her, but all the exercises were for her alone. I did the basic stuff. Helped her stretch out, and reposition, but the rest was on her and she didn't do it.
I know the way I typed it I made it seem like it was a one time thing, but she has had numerous physical therapists. And they basically all say the same thing, that they can only do so much. And that she probably needed a more intensive physical therapist facility. But that to qualify for that she has to be able to do basic care for herself and she cannot.
BTW, she also had neck surgery from the neurosurgeon, but again, nothing came of that. It didn't help her legs.
Anyway, I typed a book. Sorry.
My mom uses a walker too. She had many falls. The fire department had to help. There were ER trips, etc. I was doing it all alone also. It takes it’s toll on us and certainly on our moms as well. They have lost their independence. I empathize with that.
Anyway, the mother/daughter relationship changes after we start full time care for them. It truly does. There is too much togetherness for one thing which causes friction. It’s natural to get on each other’s nerves, say things that we don’t mean and so forth.
The caregiver runs the risk of burning out which I did. I didn’t even recognize fully that I was burning out. I kept thinking that I needed to do better because of mom’s growing complaints. It happens gradually.
Our moms still think of us as their ‘little girls’ and don’t necessarily want us to tell them what to do in spite of them being fully dependent on us. It is complicated. Emotions get jumbled up, essentially becoming frustrating to the mom and daughter.
So don’t beat yourself up about this.
My mom became an instigator and stirred up crap between my siblings and me. I couldn’t take anymore and told my brother that if the only thing he could do was criticize me and he felt that he could do better than he could take a turn with caring for mom. I told mom to go with him. It became too much for me to do. I did way more than my share alone. So she is now with my brother and sister in law until they place her in a facility.
My mom did rehab in a nursing home. She did home health several times that included occupational and physical therapy. She did improve some but Parkinson’s is a progressive disease and at nearly 94 years old she is going to keep declining.
The challenges get harder and harder. Still, you have it worse with your mom being wheelchair bound. My mom kept saying that she will end up in a wheelchair. I discussed it with her doctors and both the primary care doctor and her neurologist said it would not be in her best interest to use a wheelchair.
Sometimes the elderly get so tired emotionally and physically that they simply want to give up. My mom was ready to be with my father in heaven. I can’t say that I blame her. What is the point of a long life without a good quality of life?
I wish things had not ended the way that they did but also realize that not all of us have the ‘happy ending’ that we’d like and I am learning to heal my head and heart in therapy.
I am not close with my brothers for a variety of reasons. I tried many times but we don’t have the power to change certain situations. I no longer have a relationship with mom either. It’s sad. It’s difficult to grieve for someone that isn’t even dead. There isn’t closure.
People on this forum have been incredibly kind and supportive and I appreciate it tremendously.
Please don’t burn out like I did. I wish you the very best and hope things get better for your mom as well.
Vent here anytime. We care. Many, many hugs for you.
I have a lot of empathy for my mom. I don't fully understand because I'm not in her situation, but taking care of my mom is a choice, for the most part on my end, on her end it is not a choice. I can absolutely stop at any time if I really wanted to. But she cannot stop being wheelchair/bed bound. I can't imagine how scary that is for her.
But I also have empathy for myself, which makes me unable to understand how she can lack empathy for me. I think I'm just feeling unappreciated.
Your brothers get to work and save for their retirement and get Social Security credits, but what about you? Does your mother have anything to inherit, and, if so, does it get divided equally between you and your brothers? (If so, how is THAT fair???)
Why can't your mother pay you out of her own funds?
Do you lift her a lot (into and out of bed, chairs, off and on the toilet/commode)?
How is your emotional and physical health from all of this caregiving?
How long do you think you can continue?
You said she got good PT in rehab. Is that rehab also a skilled nursing facility? Wouldn't it be great if she could be there, get PT to maintain her functionality and you could get back to earning a living?
You could visit as a loving daughter, instead of being an unappreciated unpaid servant.
I do Graphic Design online at home. I'm so thankful that I've been able to make an income that way.
Let's approach this from another angle: what is your mother able to do? Write a list of everything you can think of that she can do on a good day.
Your brothers and your mother's sister should be asked to help out, both with their time and finances. As long as you are doing everything, all the relatives stay away, and to be rude but honest, "they'll take what they can get." It's worth a try to see if any of them are willing to help out. Also, you need to clarify what is the financial situation in terms of your mother's finances. Does she have a will? Have you seen it? Is there a Power of Attorney in place? Do you have responsibilities there? You will need to be proactive--i.e. take initiatives --to sort this out.
With hopes and a prayer that you can improve your own situation whatever happens with your mother.
1 It's not your fault
2 Sadly, it's only gonna get worse in every way
3 You can't listen to any rationale of the parent for their own well-being because it is distorted with dementia, guilt, FEAR, loneliness et al
4 Don't try to be responsible for their quality of life (see #2)
5 Kiss your inheritance goodbye
6 Let go and seek an appropriate ALF
7 Check in with your county social worker or veterans liaison (we got $1200/mo from her husband's Veteran benefits "surviving spouse aid & assistance)
8 ALFs are wonderfully prepared for all the conditions and situations you describe. After the initial anger the parent may have about losing their independence they may come to realize that living in a full care situation increases their independence because they are no longer dependant on their children!
A few considerations with ALF that we found useful:
A small private apt so mom has her cute personal items and identity
Choose an "Age in place" facility meaning they keep mom even as she declines AND that takes Medicaid. If she depletes her $$ then they will take whatever Medicaid gives for a shared room (which isn't bad as it is good stimulation whether mom likes or hates her roomate - honestly)
Includes: Medication Mgmt, bathing, housekeeping, call pendant, all meals in dining room (make sure not far from mom's apt), laundry, mobility assistance (wheeled into dining room etc), phone/cable/wifi, a Dr or PA visits the facility weekly (we changed to that Dr.), on-site providers of labs/imaging/prescriptions and OT/PT/Podiatrist. I literally am responsible for 1 bill a month ONE!
Our facility in Florida (Pt Charlotte) includes all this for @$3k month. Remember if she doesn't have enough $$, Medicaid will step in, but only for a non-private apt which usually has a shared LR but private bedrooms.
I am assuming my mom's increased immobility (she has chosen to stop walking for no reason except she is old and giving up) and confusion from chronic UTI and vascular dementia will require her to be in Memory Care ... and that's too expensive so I will choose a non-private room for @ the same $ in our ALF/MC facility.
Honestly, my mom's relationship with me has improved because she's no longer beholding to her daughter for custodial care which inherently seems to make them humiliated and angry (at themselves mostly).
I visit everyday every other month - so I have a break to care for my regular life out-of-state. Even when I am there and she needs to toilet I call a caregiver to allow mom to have her dignity. It has worked beautifully for us. I hope the best for you too.
attention/assistance and a small home can provide this. There is nothing gained by
wearing yourself out; don't ask anyone's permission. Do your homework, check out the local availability, figure out the finances...and then DO IT!!!
For your mother, of course, what she says comes of where she is. She is depressed, sad, bitter. Apparently, and you do not say why, she has been debilitated for some time? She is already in a w/c at a relatively young age and has been ill for some time. I could not be more sorry for and about her; but I do not feel your life is the sacrifice required now for the next 2 decades plus.
You say you would feel guilty? Why? Did you murder someone? Did you visit this illness on your mother? Do you feel you now must mother the mother who mothered you? Because that is not how this works. That's not how any of this works. I will repeat the Eagle story. This time let's make it a MOTHER eagle, because I am sick of telling it.
There is a massive earthquake and flood. The mother eagle must move her chicks from a precarious nest, carrying each across raging waters. She takes the first chick from the nest and starts across the waters. She says to her eaglet "And when I am old will you take me alike across the raging waters" and the chick replies "YES, mother. I promise I will". She promptly drops the chick into the raging waters where it quickly perishes. And she returns to the nest for the second eaglet. She asks the second baby "And will you alike carry me across the raging waters when I am old and weak" and the second eaglet says "Mother, I am sorry, but I do promise you that I will carry MY OWN babes across the raging waters to safety. And if there is strength left in my wings I will return for you". This is the baby the mother eagle saves.
You need now to live your own life. Explain this gently to your mother. See to placing her in the best care she is able to get for herself; visit her often. Not everything in life can be fixed. Not everything can be made perfect. Not everyone can stay well and able all their lives. But the sacrifice of your one life on this altar, while Saint-like, will get you nothing but a wasted life. That sounds so very harsh and I am so very sorry for it. It is the cold facts. If you wish to spend time feeling guilty that you are not a Saint, not a God, not the good fairy, but simply a flawed and inadequate human, then by all means feel guilty, cry a bit. Then go on and make yourself a life, doing what good you are able in our world to the best of your ability. Welcome to the world of flawed and well-meaning humanity. So very sorry for all you are going through.
In my mind, I had to have an invisible wall between us, so that anything she said bounced off of it and did not get through to me to hurt me. My sibling lived out of state and didn't travel, so I had everything on my shoulders. Not easy but I reasoned with myself that at least I didn't have to put up with disagreements about Moms care etc.
Even though I had always said I would not place her in a home, I realized I had to, both for her sake and mine. It was the best thing I could have done for both of us. At the home she had others around her besides me. Activities at all levels of interest. Mom's was the music preformed for them. Was she still a handful for the caregivers at the home, at times, you bet, but they knew how to appease her. No matter what angry things she ever said, I knew I did the very best I could for her at all times.
In the twilight years of one's life, many show anger as they struggle though the loss of mobility, loss of being able to do for themselves, loss of memory, fear of the future. I found what worked for me, besides the invisible wall, was to agree, change subject, or just don't react to what is said. I now use this with my husband who has alzheimers.
Know you are doing the best you can and take care of yourself. I found what MARIANNEM said in her comments was so true. A big hug from me to you.
I'm sorry your mother made that comment that was so hurtful. I'll bet she didn't mean it; of course you've been a wonderful daughter to her and she is lucky to have you. BUT I think you need to change your life unless you want to be writing a similar post at age 57.
My FIL told my husband and I that we gave him cancer. My husband was incredibly hurt and mad and every other emotion! My FIL had prostate, kidney and cancer already, but WE gave him lung cancer. It was, I think, eating my husband up. Guilt, anger, everything. We have had to put a wall around ourselves and not let him take us down with him. It has helped imensely!
For us the pattern was the more we did for him, the more he needed us to do for him.
Best of luck to you!
(Expect that they will be arseholes about it). You may want to consider becoming mom's medical proxy also, & POA, before u let all this be known. Just a suggestion. Hoping the best for u, you've done all u need to do friend. It's ok.
My questions (personal, no need to answer) are regarding your life/ your wishes. Are you married, have a sig other? Do you have your own family? Do you want that? What about work? Where you want to live? In another place?
A friend's mother (with advancing MS) moved herself into a nursing home when her care needs increased so her 20 yr old daughter could leave home & travel She also sought a divorce so her husband could re-marry. He declined for many years but eventually re-partnered. I am a mother & have told my daughter to put me in a home if/when I require it if I cannot care for myself. I want the best for her, which is for her to life her own life.
I make no judgement on the life you've chosen. Your Mother is incredibly fortunate to have you - whether you are her 24/7 carer or become a daughter who visits.
Your family has made you a patsy for dumping all this on you without support so send them all a registered letter outlining the 'NEW NOW' - you need to talk to a professional to protect yourself ASAP - if your family doesn't like then tough toenails because you don't like it either so they need to pony up or maybe it is time to walk -
You don't seem to have any outside life & if you are ever going to get one then start now because you too deserve to be happy & you definitely are not now so a big change is in order before you become the maiden aunt that covers all the problems for the next 40 years
But I would. I want to. I want better for both of us.
I know that you've done your best and I know that it's not your fault.
Thank you for doing all that you are doing for your mother.