No one really helps me. I now live with and care for my elderly mama and it is like reverting to having a baby almost. I hate the role reversal and it is torture to see her decline day in and day out. I resent that my brothers get to visit and then go on about their lives. I resent that her grandchildren ride by her driveway and never stop despite all she has done for our entire family over the years. I feel like I am slowly losing myself and like a drowning cat.
No one person can do 247. If they won’t help or if help is beyond or beneath them, then mom gets aides that do for her part time and if she can’t afford, house is sold.
States and other entities have various programs; put in your zipcode at FindHelp.org, a good resource to find free and low-cost services that're local to you.
And don't forget to take care of yourself; take advantage of whatever support will allow you to take some time for yourself. Don't forget your hobbies, your spiritual life, some form of revenue-generation, or your friends.
Wishing you peace.
The daily diaper changes and laundering get to me but my biggest concern is keeping her cigarette habit manageable! She has to smoke only outside and in the kitchen or my room where I can see her, as I have seen burns in the couch, etc. I’ve stashed them and the lighters but it’s a constant vigil.
I live in Canada where the health care is covered, so Home Care comes in once a week to bathe her. I now need them for more respite, which depending on how much respite, may or may not cost me.
If she doesn’t die at home (best case scenario and one I hope happens sooner than later I’m sorry to say but don’t feel guilty about any more), then I’m looking at the cost of long term care in an appropriate faculty. She will fight that one tooth and nail if it comes to that.
Are you able to get respite care or any funding for a nursing home? You need these kind of supports to help you, the caregiver. Caregiving is a full time job that will totally burn you out if you don’t seek care for yourself too. You need the support just as much as your mother! Friends, family, neighbours, the church, government programs - line up as much as you’re able. Don’t feel guilty, you need to keep your sanity for both of your sakes!
Golden years eh?!
It's such a difficult spot to be in because as long as you continue to do it no one else will. Sad fact and I found myself resenting my loved ones. Everyone convinces themselves they are doing their part with the rare telephone call, unsolicited advice, occasional useless gift and empty promises to visit. The only way I got through it was to realize that I can't change people and if someone was going to be that one tasked with the duty, it would have been me. I was always looked at as the responsible one and admittedly the least selfish of my siblings. (Not to discredit I was able to get some occasional relief from my sister, father and aunt, but only when it became evident I was frayed - nothing long-term).
I eventually gained support through a wonderful hospice team, I'm not sure what I would have done if not for them. My manager & colleagues at work were very supportive and I talked with friends when I could without trying to be a drag. Still, it was very depressing and isolating. It seemed as if there was no end in sight - a constant cloud hanging over your head.
There are resources out there, especially at the local level. Please make time to research, learn about them and take advantage. Honestly, I wish I did. I spent a considerable amount of Mom's money on respite care prior to her getting on home hospice. Hospice also allowed for days of respite every 90 days - be sure to take advantage of that should the opportunity come No amount of time is ever enough. You have to self-preserve the best way you can. if your job has an Employee Assistance Program, see if they can help, too.
Get out - go to the store, get a massage/mani & pedi, hang out with friends - let someone else take over for those instances. What would happen if you decided "no more"?
Good luck to you!
A while back there was an another family member who needed round-the-clock care and when I took care of her, I could transfer her from the bed to the chair alone. When the agency aides came in, the charge nurse insisted that they not move her alone and they were treated like precious pieces of glass.
They would come wake me up to help move her and this defeated the purpose of them being in the house. I had other obligations and I was exhausted.
When I was woken up, I couldn't get back to sleep. I would have told them I didn't like it but it seemed too confrontational. It seemed like the charge nurses were always interested in how their aides were doing but never asked how I was.
I never was given a chance to offer any feedback.
The Caregiver finds they are no longer living their own life.. they are living the dependant person's life alongside them.
Drowning is a good way to describe it. Your boat is sinking under the weight of pulling your Mother's boat along too.
A long time ago.. I had a goal to FLOAT.
This required many more helpers to row. First I needed to see this, accept it, research & implement the changes.
For you, this will also take seeing the situation with fresh eyes & setting some new goals.
Scrap any promise of 'staying in her home forever' if there was one. Go for something more realistic like 'age in place within reason'. Call it Plan A.
Then work towards getting more helpers. If no family raise a hand, then look for NON-family eg home care services like house-cleaning & deliveries to make life easier for you + paid aides for personal care 2 x week & maybe adult day care for company for Mom. Finding out what is available in your area is a good start.
Keep assessing your plan. For some, home care is just not possible. The needs too high, no local services or their own health or life needs. Running a NH for one is certainly not for everybody!
Then you move to plan B.
After floating, hopefully you can even start to swim again!
i’m in the same situation, drowning.
your words help me, because i feel heard and understood - even though your answer is for OP, and i didn’t ask any question.
——
i hope you find a way OP, sooooon!! you’re in a very unfair situation OP; so am i.
i’m drowning, solving (alone) millions of problems for my LOs.
i’ve written it many times here on this website: please don’t sacrifice yourself.
and here i am…drowning.
i’ll find some way.
i wish us all to find a way.
Is there LAW that you yourself are obliged to do hands on care?
Can you take the time while “watching” her to research what financial resources are available to get you more help?
If she DOES own her home, will the sale provide enough funding for residential care?
It is WONDERFUL to feel loving concern for people who are unable to care for themselves, but you have responsible for yourself as well.
Unless there is a LEGAL obligation, NO ONE, not your siblings OR her grandchildren OR YOU, should be saddled with care, especially if reluctant to do it.
I TRIED to care for my mother, whom I dearly loved, failed miserably, gained 60 pounds, and finally placed her in a beautiful residential setting, where she lived over 5 happy years, dying at 95.
Get to work on finding out what is REALLY AVAILABLE for your mother. You may be surprised to find that you can figure out alternatives that can meet her needs BETTER than you can, and free you to resume a safer healthier life for yourself. YOU DESERVE NOTHING LESS.
Look for Adult Day Care programs in your area. Getting mom involved in one will help you as well as her. Typically they will pick up in a van or small bus. Provide a Lunch and Snack and return them home in the later afternoon.
check with your local Area Agency on Aging. Find out if she would qualify for any services.
Check with your local Senior Center they can be a wealth of information about programs that might help.
If mom is a Veteran or dad was she may qualify for help from the VA. contact the Veterans Assistance Commission in your area.
Beatty's description is perfect. As we live alongside our elderly parent, we have to adjust our lives downward in order to make it through. It can be super depressing and yes, there is some resentment at times because I'm hog-tied and can't leave my home unless I have a sitter in here with my mom.
I haven't been on a vacation since 2012. I've been caring for her for 16 years in some form or fashion. I've put aside many experiences, enjoyments and opportunities to care for her, which over the years, can add up to some nagging resentment.
On that note, I do use her monthly SS and small pension to pay for 20 hours each week of sitters. That's about all that is affordable but it gives me 4 days out of the house to run errands and catch my breath and just enjoy some little bit of freedom. It's worth the money.
My mother also has a bed alarm and a baby monitor that lets me at least go outside on my porch or in the yard without worrying about her getting up and falling.
However, when she is up and sitting in her chair in the kitchen, I have to stay inside nearby so I can serve her every need. Sigh....
She has lived to the ripe old age of 95 and is still doing quite well because she gets the best care that I can provide for her.
Am I ready to get on with reconstructing my life when the time comes? Yes.
Do I daydream about being able to have freedom of movement again? Yes.
But then there's that two-edged sword. When those days come, my mother will no longer be here. It's a sorrow that I can't have both freedom and my mother at the same time.
Drowningcat, you're not alone if that helps any.
Also - I think it’s time to consult with an elder/estate attorney. They can share with you whether she might be eligible for Medicaid. If so, I would explore AL or SNF.
I get you. My brother visits and calls and then goes back to his life. I’m single with no kids so I was ripe for the picking, while he is married with a child at home. I would appreciate if he ever said ‘thanks for everything you’re doing’ but he hasn’t thanked me once and joked that I’m ‘doing God’s work.’ It’s not funny when you’ve given up your life.
We have applied for SNF ourselves. There are long waiting lists. My father is waiting for an event like a fall that will make the decision for him. In the meantime, we’re running a nursing home over here.
Sending love and support.
Think about what you really need and be specific. For instance, do you want them to pitch in by coming in to to relieve you for 4 hours twice a week so you can get out with friends or do your thing? Would it help to have someone else bring your Mom back and forth to doctor appointments, go food shopping and do errands, and/or take her out of the house for a couple of hours? Can they all pitch in to help pay for a well-vetted aide to help out several hours a day?
Don't wait, don't obsess, just DO IT!
But I found ways that have been helpful when I feel the pressure.
SInce I dream of traveling, I have moments of escape in my prison by preparing for that time. You can have hope instilling oasis' too by doing things in preparation for when you are no longer trapped.
For me, it's working toward becoming a minimalist, and although not related, I like working in the kitchen trying new almost easy recipes.
For you, it maybe collecting vacation brochures, (okay I'm stuck on traveling) and watching very clever suitcase packing hacks. Maybe you could sew dolls, or stuffed Teddy Bears for children in hospitals. I did that using old jeans.
For 15 years on occasion I would introduce my husband and myself in this manner - "…glad to me you. I'm Michele and this is my goiter". This life is killing me but it is my duty and I paid big time for permission to make jokes, which brings me to your statement in your Profile.
"She is just very negative - always has been". You have a huge right to be negative, compounded by years of exposure to this kind of grooming, but it will take a toll on you.
I know caregiving is difficult, it's pure sh*t, (don't get me started on that subject), and h*ll and up there with cruel and unusual punishment. To make matters worse, being raised by such a negative lady as your mom, you are now in sufficating proximity to her mental and spirit squashing ways. The mental and physical exhaustion of caring for this human joy sinker, who did not in fact promote life in your life, is mind screwing and heartbreaking.
I can't imagine how I could deal with my Debbie Downer husband if I hadn't been raised by a father who use to joke a lot.
It is your job to work on not being your mom. Practice focusing on the fortunate and brightside. Not many people can say like you do "Thank goodness for one sister-in-law that helps me bathe my mom and provides hot lunches x 3 days per week for me to work" and a supportive husband that takes you “out of town at least x 1 weekend per month”.
I'd do backflips in my underwear in Macy's window if I had that kind of help.
like another writer posts I find some time to relax by developing healthy meals and even plant based meals since Mom no longer likes meat. Ive also become somewhat of a researcher on topics of many topics on healthcare and Federal policies, and many medical topics, and others. I love home renovation shows, and collect things nursing home residents need when I visit another relative but I cannot visit a lot but It is not an environment I want to be placed into or any of my relatives. By seeing that I’d Only proceed in that direction with immense caution. And I would remove my relative from there if I could. She’s deteriorating there slowly. She’s Kept clean but no evidence that rehab services were ever provided to her.
About Me
I am the only daughter and get little to no help from my siblings barring the occasional 'drop by' or occasional 'I'll bring a pizza over'. Thank goodness for one sister in law that helps me bathe my mom and provides hot lunches x 3 days per week for me to work. I moved in temporarily but ended up staying due to mama's declining health. I lived a few miles away and was killing myself anyway trying to run 2 households, so just made sense. I took care of everything pretty much since daddy died x 5 years ago and I am feeling the impact on my emotional and physical wellbeing. My mama will be 94 in a few weeks and is a wonderful mama. She is just very negative - always has been. I literally feel like a drowning cat. I have recently had a breakdown and my brothers agree to cover me and my husband to get out of town at least x 1 weekend per month. My mama can no longer cook for herself (for the past year or more), can not bathe alone, can not get out of the house alone or drive. I am her person now. She freaks out when I do try to get a break and even has hallucinations. They stop when I get back. The longest I leave on the rare occasion is literally about 48 hours down to our beach place. I am desparate and do not know how much more I can do all of this and then I feel terrible for these feelings because I love my mama so much. I feel resentful for getting so little help. The rest of the family just go about their lives.
Have you looked into getting your mama placed in a long term care residence with Medicaid, if she has no funds, or selling her home if she has one, to finance her long term care, thereby letting you off the hook?
There are many ways to care for a parent and many ways to show your love. Leaving your blood on the floor is not the 'only' way of doing so. Having a breakdown and coming back to provide hands on care is not doing you any good. Having all this resentment eating away at you like this is not healthy.
If you place your mama, you can go see her every day and revert back to the daughter role once again, get rid of the resentment, and ensure she's cared for 24/7 w/o leaving YOUR blood on the floor in the process.
You have no reason to 'feel terrible' for having feelings that you want to escape this nightmare you're living in. Your mother having 'hallucinations' only when you're gone is very revealing. You deserve a life too as her life is not the only one that matters. Your life with your husband matters too. Remember that. Negative behaviors take a toll on us daughters after a while and are best managed by a staff of caregivers who aren't emotionally involved.
Please consider doing what's best for all concerned here, and placing mom now. My mother lived in Memory Care Assisted Living and was beautifully cared for by a team of loving caregivers for nearly 3 years. She had way too many issues and negative behaviors for me to deal with at home; she'd have killed ME in the process of trying to care for her, so what would have been the purpose of trying? And yes, I loved her. Again, there are many ways to love a parent and still have them cared for NOT by us.
Wishing you the best of luck
I know how terrible it feels.
I am sending you a virtual hug.
Its like nails on a chalkboard...feeling like your whole life comes to a grinding halt when caring for your sick Mom, everything you do revolves around the caregiving role....and everytime you get used to the routine....she gets sicker and you have to change up the routine again !
I read once there are 5 'languages' to show love (can only remember 3).
Some bring gifts - the flower or cake bringers. Some spend time, call to chat. Some do things for others - jump in to tidy & do the dishes without ever being asked.
Your siblings may have 'love for Mom' but have this completely separated out from the task of 'be Mom's nursemaid'.
Does that make sense?
I see it with my in-laws - they all love their Mum.. some jump up first to DO, others relax, sit & listen.
It would not occur to my DH to be a nursemaid/practical personal care aide at all! Yes, maybe a male/female thing but also not his skill or interest. He would climb a ladder & clean gutters or clean out awful blocked pipes - but never help with bathroom duties 😜