I HAVE HAD IT...for today!

What happens if your LO is just over the Medicaid limit and gets turned down; the letter also mentioned she could reapply if she went into a NH. There is no money, other than SS, no house, car, investments.... I am unable to care for her; have my own issues. She is beginning to slip badly, physically and mentally, and soon the "village" that cares for her will not be enough, according to her doctor.... then what? If she ends up in a NH and "reapplies", what happens if they turn her down again?

Your last sentence revealed a positive note despite all you are enduring. You cannot be replaced. I am guessing your mother cannot utilize any programs outside of the home most likely due to incontinence issues. I am emotionally dealing with the same issue. Yes my mother is in AL which is a blessing but money for that will eventually run out. I will have to go down the path of hiring an elder care lawyer. If she lives on and on we would have to sell our house. We also have grandchildren in different states that we visit at times to bond with them of course but also to help our children with their care. My husband and I are only children. We had alot to deal with my late MIL for the last 5 years of her life. I hope you have positive feelings regarding your mother from your childhood. I really don't. She spent long periods in bed when I was growing up. She has been a Christian Scientist for years. It is a religion I detest. She avoided receiving medical attention at various stages until she became completely immobile. That religion never healed anything. She could never be a hands on grandparent due to her physical state. She now takes medicine to basically stay alive but years of deferring health maintenance has her not in good shape to say the least. My husband and I are in our 60's and have health issues of our own. On top of all of this I was just recently told that she is progressing towards Alzheimer's. So I don't have an answer for you except to say that if you had early years that were nurturing for you then there is at least that. I don't know what that feels like.

First of all I find myself (one person, just me) acting the part of a fully staffed nursing facility. I do everything a nurse, aide, physical therapist, cook, laundry, maid, pay all bills, chauffeur to doctors appointments, bathing double incontinence, etc., all while wondering when my mom of 80 will ever sleep through the night, wondering how my torn labrum in my shoulders and my disc in my back can keep this up much longer, 24-7. It is a problem baby boomers are having now, those of us who still must work, those of us whose parents don't qualify for Medicaid or VA benefits, those of us in the middle income ... Not poor or on welfare, but who make just a small bit over the Medicaid monthly allotment. So there is no way out of an exhausting, mentally challenging task that must be endured. For who would care for my mother with loving tenderness and gentleness and compassion, if not for me? Some day I might be in her predicament.

I get it. I’ve been there caring for both my M&D. I finally got her to accept getting a bath from the HH aid, but it took a while. In addition to telling her that I can’t to it all, I told her “there are things only I can handle for her/them and this is one thing I can delicate. Please do this for me.” After a while, she conceded. It helps that Daddy is so agreeable and easy. Being a full time caregiver is exhausting...especially not know how long it will be. I wish you all the best.

I have my husband who is also the same way. He has multiple medical problems. I use my 3 4-hour caregiver times for certain things. 1-tai chi at a center, 2-to visit my mother, 3-for my appointments or whatever I need. My husbands condition is such that he can be manipulative and childlike at times. I often feel like his parent. I have to be stern and tell him “today is shower day!” Period! It’s not much fun but takes the “discussion” out of the mix.
Hang in there. Use your caregiver time for what You need! You’ll feel better for it.

If she’s anything like my mom telling her she stink will just offend her and make her angry! I will tell her we are going somewhere or a drs appt but if she doesn’t bathe then I just have to let it go. Fortunately her care giver that comes 4 days per week for 5 hours can get her to shower usually 2x per week. When we travel I try to do the same but it’s not worth the fight! Fighting her will only stress you more. Sorry but yes this is what you have to look forward to. Find someone who also is caring for a parent and and get together once in a while, have a glass of wine and share or vent to each other. I find that does help me.

I understand completely. I feel guilty but often wonder if I will ever be free again. Fortunately, I have one sister who helps - we do it together - but othe siblings just do their life - and I cannot help but resent them. I have put my mother on the Assisted Living Waiver List in California - which is a real blessing for folks with no money for assited living. She is willing to go when it is her turn.

Unfortunately it seems like your mother only trusts you. I was a caregiver for 5 years and I summed it up as a "prisoner with a purpose." When you establish yourself as the caregiver , it seems that you are the only one they can trusts. If you have a person come in during the week, then be there with her as she gives her a bath or they can bathe in in the bed which would eliminate the getting in the tub. In Hospice care, they have bathing supplies that doesn't require water or you can use a basin and clean her up that way. I had to get creative and tell my mother of fictitious doctor's appointments or people coming over. Frustration and anxiety is apart of this journey so don't feel bad. Many times I just wanted to leave and never come back, and no one ever knows how hard and difficult caregiving is until they actually have to do it. I hope this helps you and be blessed because you are doing a great job even though it doesn't seem like it.

I get so frustrated when I see these types of issues. I took care of my mom. Tell her she stinks. Tell her she looks awful. Tell her she needs to stay in her room unless she gets cleaned up. Accept it. You are now the parent. Please, nobody tell me how mean I am. Elderly get stubborn and spoiled like a child. I'd let my mom be stubborn but I wouldn't give in. She did. All it takes, hopefully, is one timeout.

Don’t give your mother a choice. Have your 3 day a week caregiver give her the news shes getting a bath today and don’t be present when she’s told the news. Most times our parents are nicer to caregivers and won’t say no. I would always tell my mom after a bath/shower how good she smells and looks. If your caregiver can’t be firm with the news ask your hospice provider what they recommend. God bless you!

i can't say anything but can pray for you.

Oh boy do I completely understand what you are going through. I really can't offer you advice because I myself don't know what I'm going to do but I sure can offer you understanding it's hard being the caregiver and trying to run your own life to sometimes our mom seem to forget that. I hope you find good advice and I hope you find time for yourself

I just want you to know..that I completely feel for you. Can you have the caregiver come 4 x week? So your day off is yours!!! I always remember what is said on an airplane...put your oxygen mask on first then assist your child. Basically, we need to realize that if we don't take care of ourselves...we can't take care of another. I know how easy it is to give advice to someone but so hard to follow.
Gpod luck to you...sending prayers!

Could you consider telling her that the conditions for her staying in your house require the help you need from the caregiver? Even if this may not be your truth perhaps she would be made to understand that she cannot make decisions that undermine your well being. I understand your stress and hope a solution arrives.

ambly: I get your situation. Really, I do. How are you even coping? Praying for you.

Make up a small injury that she can't see & confess to her that you have being trying to not tell in case she'd worry about you - but now you need her to have her shower/bath with the care worker until you shoulder[or back or what ever] heals - you know it won't be long but leaning/moving a certain way while helping her with the bathing has made it worse/not healing -

You'll know how to word it but that may be the simplest way & make 'appointments' with a specialist to keep up the frabrication

Good Bettina! Found myself on the hamster on a wheel routine awhile back, and my dear husband put a stop to it. Now I go to mom's apt once, maybe twice, if really necessary, a week and no longer shopping all the stores in town for her stuff all the time; she has paid help and help that's paid for by programs doing it now, thank God! Life is much better (I have a life now), and I don't really mind 3-5 phone calls a day, since I'm home a lot. The whole answer was establishing boundaries and hanging on to them.

I think a lot of people start in with care giving in a crisis that somehow turns
into years of one crisis after the other. Some parents, whether from dementia
or from a long standing personality issue, demand constant attention.

You have to take care of yourself first and foremost to avoid serious burnout
and possible permanent health consequences. Not to mention disruption
of employment.

The sad fact is some parents regard their children as personal servants. Some
even use one child as unpaid servant in order to save money to lavish on others.
You have to look at your situation as it is, dementia vs childish demands,
excessive need for attention vs reasonable request. Might change from day
to day.

The harsh truth is that with demanding caregiving situations, if we're not
careful we can literally lose our lives in propping up a demanding unreasonable
and miserable person. Someone who can be cared for without losing yourself,
your health and finances, might still be miserable, but clean, fed and well cared
for and you, you can still be intact, happy and functioning.

They might not like the lack of red carpet treatment, the caregiver doing
the bathing instead of you for instance, but face facts, if you burn yourself
out trying to make them happy and doing everything, you likely will need
to contend with even more demands

I have provided care for other seniors who were gracious and grateful.
They knew they needed help and were appreciative that it was being
given. For those of us who could never please our parents growing up
or "get it right", caregiving an aging parent whose physical situation
makes endless demands of our time, provides a tempting chance to finally
"get things right this time." Dodge that carrot, do what's right for you
your family and your parent (s) . In balance with your resources, your time
your health and other demands.

They might not like it, but they probably won't like anything other than
24/7 devotion. Which is utterly unreasonable. Or, consider this, even
if you do "get it right", your parent might then proffer all of your time and
saved income to others.

Get real about your health, your mental health and what will keep your parent
well taken care of and still have you sane, healthy and happy. You deserve it

WilmaDean, back in July you were making arrangements for your mother to go into a nursing home.

What happened?

I can relate.. going thru the same stuff! 4 years now! Hospice offering a week respite at a NH but mother refuses! I'm at the end of my rope as well! Thinking about just walking out with a packed bag and checking into a hotel for a week to be by MYSELF. If I don't I'm going to end up in the phyc ward at a hospital just to get AWAY from this MADNESS!

I totally get this and I only say I am sorry for it is a crushing moment when what we think is the right thing is probably the wrong thing for both mother and child. Take care of yourself And read what others say about not feeling guilty. I have been working on this the last 3 weeks and I feel pretty cold when I shut my mom down on the phone, but I do so as I am about to lose it. I have a lot to write here, and am doing so just to put it somewhere outside of my body and mind, so please know we don’t judge and it is therapeutic to let it out somewhere! It is amazing to read through these stories and see how similar some of them are to mine or another's.

My Mom broke her hip and while she was in the Hospital, my Dad passed away. When my mother was finally released from the hospital, she came to live with me and my husband as I knew she could not cope with being alone and the grief. Sadly, for many years before my Dad passed, he was complaining that my mother was being abusive – – yelling, being disagreeable, ranting, etc. Many times he would call me and would be in tears and I just passed it off that he was getting older and things were not so bad with her. It was not until I moved her in with us that I realized how disagreeable she had become and I also realized that I believe she had been like this most of my life, but I had chosen to ignore it and perhaps it was the reason I went far away to school and then abroad to live for many years for I needed to escape her self-centered personality. Three years on since my Dad died, she still acts like it happened last night and tries to top the story of, for example, a friend’s son dying of brain cancer by saying things like “well let me tell you about my situation.” In her world, she is the only one who has experienced loss. Since the initial six-month period when she lived with us, she has attempted to live back in her condo, also in assisted-living twice – – and I might add both of those times she called and complained almost on the hour about how much she did not like the places she had chosen – – and then came back to live with us again. It was on this go round she started. calling me during work hours with emergencies that were not emergencies, if you know what I mean, and when I tried to remedy this situation by hiring a part-time aid to come in and assist her, entertain her and do whatever while we were at work, she refused the aid and became really ugly. Over the first 2 years, I started doing poorly at work as I could not concentrate on my work. I too had moments when I would drive to the grocery store and would just stay there for hours drinking coffee as it was my only time out of the house. I eventually decided to put her back in an assisted living facility by my brother (1000 miles away) for my health was nearly gone. Where she has landed is at a facility she asked to go to each time she tried out other assisted-living places, and of course, now she is there, she hates it. My brother who of course lives only seven minutes away never seems to find a moment to go and visit, so it still falls on me to scrape the cash together and go and visit on long weekends. When I do go, she talks about how I never help her, how I’ve never been able to visit her enough when she’s been in Assisted living, how her friends think I am wrong and how miserable it was living with me and my husband. My initial plan with getting her situated by my bro and his family was to get a break after nearly 3 years and get myself back on track with my job, however, I moved her and still lost my job. When she hears this she is somewhat hopeful that now I will say, ‘oh come on back and I will take care of you full time.’ Tough call...and even if I do or don’t take her back in, it will be bad either way for she never lets anything rest. What is the answer? There is no right or wrong one, but take care of YOU first.

My mother also has bathing issues. She lives alone and will not agree to a caregiver coming in to help with hygiene issues. Your statement "She gets quiet and acts like a child" is spot-on. My mother does the same, and I used to feel so guilty and dropped the subject. That is the key - not feeling guilty. My suggestion is to push past that guilty feeling and be firm on the fact that the caregiver will be the person to bathe and wash hair. It's so hard to be firm with aging parents, but I've learned to make myself be firm, take a deep breath, and swallow guilt. Prayers for you as you do your best, and kudos to you for having her live with you. I am not sure I would be able to do that.

Its ok. What you are feeling is normal. Your mom just wants the extra attention from you to feel secure as their illness causes fear, anxiety and insecurity with others. Maybe if you bathed and washed her hair a couple of times with the caregiver she may feel she is an extension of you. Yes your life does feel like its over..it is a sacrifice, some days you will be ok with it and other days you will resent her for it. Her level of dependency will increase..seek support now.

Hi you say your Mom’s in hospice
take advantage of the hospice social worker or chaplain to give you support. The social worker may be able to help your mom understand that the aid is a part of a medical team ordered by the doctor to provide this service.
Also ask about the 5 night respite that hospice provides so that you can have a break

Ambly02- I totally understand!! The guilt and frustration and the need to just “get away” - all of those conflicting emotions at the same time. Sometimes feel like going to a Caribbean island in a grass hut on the beach without a phone, and coming back when it’s “all over.”
in the meantime, I find that writing down a schedule on an old fadioned calendar works. Have your mom look at the days, visualize what’s already scheduled for you and for her.... and make sure you include “grocery store” “work,” “hair appointment” and “dinner out” for yourself, as well as all of HER scheduled activities such as “bath with caregiver xyz” and “hair washing with caregiver.” If she sees that you are unavailable for a large part of the day, she might agree to go about her own personal care routine a different way. If she guilts you into feeling bad, just refer her to the calendar and ask her “when do you see that I am free?” She can’t put up a fuss if there are no available time slots in the day....I’ve used different colored pens to show my activities and dad’s things, too!
He looks at what’s coming up and respects that sometimes I’m busy...
good luck- and please schedule your “breaks” for YOURSELF!!!

My father was the same way.....and there was nothing we can do about it but say "it's Ok, she just wants to wash you." first he would smile and say hello, but once they wanted to wash him, out came the swear words. Every kind he can think of saying. Then he would pout in his chair for an hour, and then he'd be fine again. So give it another shot...maybe be there while she tries to wash her...or help her out some, maybe she doesn't want it to be just her that washes her, she may be embarrassed. I know my father was.

I TOTALLY understand what you are going through! My 84 yr old mother has been living with me for 5 years!!! Yep, that’s right 5 years!!! She was just diagnosed with Alzheimer’s a few months ago and I feel like I am going to lose my mind!

she refuses care, she refuses to let me do anything, sometimes she is so mean I yell back something terrible which I feel Horrible afterwards. I am seeing a counselor which is helping but it is tough!

Ive tried to get her into assisted living but she was so awful to the workers there that it was humiliating. It was just a “lunch” there!!!

Ive learned to just have someone come in and leave. She figures it out with the aid. It is always pleasant. It’s just when I’M around she carries on. She doesn’t act this way around my husband either!!! JUST ME.

So, tell the help she needs a bath and her hair washed and LEAVE!

Goid luck❤️

CaregiverL: " I think she is possessed by Satan & was extremely violent today. I had to wear my bike helmet my nephew gave me w chest protector..I just gave up & put her to bed w her clothes on"

This upsets me. If your mother is that violent, you need to stop being the caregiver. Please don't subject yourself to this abuse. I don't know your full story, but she needs to be placed in a geriatric psych facility and given meds to calm her down.

I just cried reading your story. I feel like this so many times! Often I wish I just packed a bag and never came back.

I have found through the last 12 years of caregiving for my mom(91); that the more I let her "get" away with behavior , the more she pushed it. So, I had to decide that I would dictate when I will be available to grocery shop, shower her, fix her hair etc...I use to let her decide and it got to where it was taking up my entire life! Now that you have a caregiver coming in, TELL your mom "today (soandso) is going to give you a shower and you ARE going to take it! GOT IT? and if she refuses, that's when you tell her that you cannot help her if she doesn't help you help her (and then...or else) I have tried to let my mom make decisions because she has very little control over her illnesses BUT she started taking advantage of me with little to no thanks or consideration of my life. She is not happy with the way things are now, but I know that she is safe, fed, clean, makes it to her Dr. appt's, gets her nails/toenails done, hair fixed and meds controlled. AND now I am much more at peace because I have learned to just ignore her attempts at guilting me. It's not easy but you can do it if you just make up your mind to and then stick to your guns. I have not had any help from family until last year when my younger brother retired and fortunately he now helps some. I was sooooooo burned out and used up that I wanted to die (or for her to die) I just needed some relief! It is better now that I don't let her mess with my head/heart. Sadly, you sorta have to kinda become numb.