I try to be patient, understanding and kind, but the irritation gets out of hand too often and I end up screaming at her. She tries to resist me all the time and it's just exhausting. I just feel like a bad person, not worth anything anymore. Who screams at their poor old Mother, I feel so ashamed...

A quandary is my Mother is on Medicaid so I don't really trust State run agencies to care for her. Also she would have to live 30 miles away and I'm still working. She is here alone for part of the day, but I'm monitering everything and it seems to be okay for now. I will retire if I have to to care for her, but I would like to go for one more year. I need to. It's such a losing situation. Also I depend on her small portion of rent to help me pay my Mortgage payment. It isn't much since she didn't work much in her life, but it helps me to take days off to care for her and to rest sometimes. I feel like such a lousy daughter, I try to care for her and show kindness everyday but sometimes I just snap and feel I can't take this situation any more. There is only me, and we moved to an Island about 10 years ago, but we still know no one. I just can't come out of my shell here. We (Mother and I) have always been isolated (it's a long time family dynamic) but now it's even worse now that almost the entire family has passed and the ones who are left are very elderly themselves. Mother does go to a senior Day Care program once a week and that helps. But the unrelenting day after day, week after week, 7 days a week of telling my Mother (she has dementia), every little thing she has to do, all activities of daily living, just everything and then the daily routines have to be repeated verbally at least five times and sometimes more. To try and run her life completely is so stressful for me and so contrary to the relationship we have had with each other. She was always totally independent and hated anyone who intervened in her life. And then there is incontinence both fecal and urine. It's not constant, but I am dealing with her urine and feces everyday and it's depressing. I know it's not logical because she has dementia, but I feel so upset when her package of open pads are right next to her but she just won't put them on if I'm not there right at the moment. And yet at many times in her behavior she seems fairly normal in her reactions. The ups and downs of dementia are continually baffling to deal with. I've been caring for her for thirteen years and It's just driving me bonkers. I feel so depressed I don't talk to anyone anymore. I'm beginning to wish I weren't here anymore. I never felt like she cared much for me, she really neglected me during my childhood and that's a long story, but I always loved her, felt loyal and never wanted to put her in a home, especially a state run one. It's hard to describe, but the constant never-ending caregiving is incredibly difficult. Thanks for reading, it's good to tell someone. Any thoughts or comments would be helpful, Thanks, T.

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Wow, you are me. You asked, who screams at their poor old mother? - well, I do sometimes, she's 94, doubly incontinent and now bedbound, and I am her sole carer except for four hours respite a week when I head to the nearest bar and down a large glass of red wine! Yes I feel totally ashamed after a melt-down - I'm going to need counselling when all this is over (if I don't keel over dead before she does, which seems a distinct and not unwelcome possibility sometimes!). My only consolation is that her hearing is very poor, so I'm hoping she hasn't really heard or taken in all the nasty resentful things I've sometimes said (I tend to mutter under my breath so the neighbours don't hear), though she sees my face and knows that something is pretty wrong.

You are going to get lots of good, practical and sympathetic advice on this forum. I only wish I could add to it, but I'm just too tired and burnt out myself, so this note is just really to say, you are not alone, come here to vent when it all gets too much, and remember, you are a good loving daughter doing the best that you can in impossible circumstances - of course you are going to have melt-downs now and then, you are only human. Learn to forgive yourself, and get whatever outside help is available to you.

Sending lots of hugs!!!!!
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Penelope123 Nov 2019
Every word you said is my life too Pepita48. Some here are judgmental about feeling this way but everyones circumstance is different. No we are not abusive, if we were we wouldn't feel any remorse for raising our voice in frustration sometimes. It helps so much to know there are others like you and I and labeling anyone as being abusive if you get frustrated is just plain wrong. We are not Superwoman. At least I know I'm not!
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Thanks to everyone for writing. Didn't expect it, but I felt better after writing and receiving responses, even felt more patient with Mother, and it's lasted. I'm beginning to realize how important support is from the right people, those who know and are familiar with caregiving firsthand. Happy Thanksgiving everyone!
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Beatty Nov 2019
Writing it down, getting it off your chest, having someone listening can be a huge benefit & pep you up again for a while. Sometimes it's not enough & it's time to change the whole arrangement. The trick I think is having the energy (emotional or physical) to keep reassessing & change plans when required. Very hard when knee deep in it & just getting through each day!

Can I ask what the main goal is? Caring for Mum at home or caring for Mum wherever she lives? I ask because some people are determined to stay in the home so will do whatever it takes: renovate bathrooms, build ramps, pay $$$ for aides. If the goal is for both Mum & you to both live happy & meaningful lives, would that still look the same? You sound fairly isolated? Is that by choice? Sorry to be blunt - I am a fellow daughter with a *tricky* Mother & just wish to remind you - you matter! And you have choices. ((Hugs))
I would go to bed at night resolved to do better, be more patient etc but found myself snapping earlier and earlier each day. My epiphany came when I finally realized that the care I was giving my mother wasn't better than the alternative, it was unfair to my mother to be in the care of this increasingly 3itchy harridan and it was also unfair to me that all the good memories of my mother were being replaced by ones featuring this needy stranger. When I hit the wall and found emergency respite care in a facility, and from there she never returned home. I deeply resented the advice I often heard to "go back to being a daughter rather than a caregiver", but in retrospect I see a truth there.
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Frances73 Dec 2019
That is very true. My dad became so difficult in his last years that my anger about that clouds my memories of the dad he really was. Just yesterday I was trying to remember the good days when he took us camping and fishing and how much fun we had.
I am going to be what might seem brutal to you and some others, but it is meant with kindness and comes from hard-won experience. For your own sanity and in your mother's best interests she needs to go into permanent care.
I know you have a trust issue with care facilities but you need to face the facts. What you are experiencing is only the tip of the iceberg where dementia is concerned. What happens when your mother starts: roaming in the middle of the night or while you are away and gets lost in bushland or goes to the water's edge; leaves hotplates and heaters on when you are not around; is thirsty but does not know to get a glass of water; falls and forgets to press her personal alarm - if she has one, or you need lifts to get her up off the floor (these often require 2 people to operate); starts choking on her food either because she has simply forgotten how to shallow; her circadian rhythms change and she sleeps in the day and is up all night; she is continually in tears, or fits of laughter, does not know you and thinks you are an intruder and physically threatens you; thinks you/someone has stolen all her precious possessions; calls the police because she is locked in (some people are known to phone up to 30 times a day); refuses to eat because you are poisoning her, or forgets she has just eaten and accuses you of starving her.........and tucked in among that will be UTIs, pressure sores, any number of infections, not to mention delerium that can last for months.
You both need a decent time-out, so I strongly recommend:
1) you try to get your mother into a facility for Respite care for a fortnight or even a month. This way you both get to see behind the scenes - perhaps it won't be the poor experience you have talked yourself into believing. If your mother is treated well then make arrangements to keep her there permanently if a space is available. If it is, under no circumstances bring her home to pack up her belongings, it won't be so easy to prise her away from her home.
2) you need to talk face to face with people who understand both this dreadful experience and depression in its wider form. IMHO you in a very dark place, and whilst ever you are in that dreadful state you are doing neither yourself nor your mother any favours.
3) As much as you seem to be a very private family I am sure you would benefit from some socialising with your neighbours. A problem shared is a problem halved?
4) Needing your mother's assistance with funding your mortgage is a cop-out. If you cannot manage then sell your place and get something smaller with a mortgage you can cope with alone.
5) Residents in care facilities do not need daily visitors. If you can take the leap of faith and do find somewhere to your satisfaction (nothing will suit your mother, incidentally, even if it was Buckingham Palace) just visit her once a week. You can make a phone call daily to check on her welfare and when she is lucid your mother should be able to speak to you on the phone. But be warned, the time will come when it is not worth the effort - she won't listen, she won't respond, she will speak into the hearing part, she will press buttons, she will be incoherent.
I know this is all a brutal wake-up call but you need it for your own sanity. Eventually your mother will be so confused and befuddled she won't know where she is anyway.
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Beatty Nov 2019
Shezza1: Well done.

Wearing the hard hat of common sense (instead of the F.O.G. teeshirt supplied by many families of origin).

I want to make a club of *hard hat* wearers.
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First of all, I am truly sorry that you are under so much stress. How can you not feel like this is a thorn in your side? It’s a huge weight on your shoulders.

It’s natural to get upset about your situation and I feel it’s also natural to get upset afterwards. This isn’t about lack of control though. It’s about being overwhelmed.

No one is perfect. We all lose our temper at times. We also lose our patience when we are overly stressed.

It’s impossible to feel like this is a normal life because it isn’t. Your life has been turned upside down. It’s natural to feel resentful about what you are going through.

I wish I had answers for you. I sincerely hope things improve soon. Many, many hugs for you. I hope you are able to get some rest soon.

Take care and vent anytime. Most people on this site know how you feel because they have experienced similar situations.

What exactly do you mean about not wanting to be here anymore? Not being with her or is your depression so severe that you want to die? If you are feeling suicidal, please seek help. I’m not judging you but wouldn’t want you to do something drastic.

It’s hard to be a caregiver at anytime but during the holidays are especially difficult.

Many hugs for you.
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I feel for you my dear. From one person who is awfully hard on herself to another, I would tell you to be compassionate toward yourself but I are totally out of it right now. My mom is 97, she's in assisted living thank goodness but when I see her number come up on my caller ID my BP skyrockets. She's the sweetest little person but stubborn. The fourth or fifth time I repeat myself to someone refusing to wear her hearing aids...well, whatever I was originally saying doesn't come out so friendly and kind. I haven't hollered at her yet, but I am awfully blunt and curt with her sometimes. Then I feel like crap. But I've set the expectation awfully high for myself to be compassionate and when I lose it I feel awful. Caring for her has driven me into therapy and my therapist tells me I shouldn't "should" all over myself so much. Meaning I should cut myself some slack and ditch my halo. I thought compassion was an endless well I could dip out of anytime I needed but compassion fatigue is a real thing. I basically was her assisted living program while she lived independently for 6 years. I talk to hardly anyone in my family about this- it is an isolating feeling- because many of them have lost their parents and love to remind me they would give anything just to have one more day with their mom so I'd better be grateful and enjoy her while I still have her. Not helpful. So I vent here and to my dogs and therapist. Dogs don't care if you swear and cry when you hang up the phone. I hope some resources can be found in your remote area to further assist you and give you back your life.
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If you want relief and return to more of a mother/daughter relationship, then place her in a home where medicaid will pay. Sooner or later, you will have to because her dementia will need 24/7 care that you will not be able to give even if you stopped working.

Are you doing this hoping your mother will change because of all your love and make you feel more cared for by her? Forget it, many have that pipe dream. It's not going to happen.

It's not about wanting to put her in a home, it's about needing to for both her sake and yours.
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Making a broad, sweeping generalization about all Medicaid care homes being terrible and continuing to care for a mother you can't stand and scream at makes no sense. Nobody is benefiting from the stress in your home and your mother is going to require more care than you alone can give her here shortly, if not currently. Dementia reaches a point where it's no longer safe or feasible to live at home, regardless of how much patience you have or don't have. The choice to get her into Skilled Nursing won't be a choice soon, so go check out some SNFs in your area and get her on a waiting list for a couple you like best. Just having an end in sight can give you some much deserved respite from the high anxiety you're going thru.

Dementia brings with it THE most irritating and unmanageable behaviors on earth, it's mind boggling, really. My mother has always been insufferable but when dementia set in, she became SO incredibly impossible that I'd prefer to shoot myself rather than care for her at home. So I don't.....shes gone from Assisted Living to Memory Care and then I will place her in a Medicaid Skilled Nursing Facility when she runs out of money. Because MY sanity is worth it, period. I have my life and she has hers. I go visit weekly and call daily. I handle ALL of her affairs from 4 miles away, and it's a lot of work, but as an only child, I'm all she has and so I wiilingly do it......but from a distance. And, for what it's worth, she was in a Medicaid approved SNF for rehab in May and loved it. It's the place she'll go back to when her money runs out for Memory Care. The care was excellent, the room bright and large, clean and well manicured grounds,,,,,it was an all around great experience.

Best of luck
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I am so sorry. The difficulty you describe is very real and you are not alone. Even though we all want to try hard and care for our loved ones up until the day they pass at home, that is not a fair and realistic outcome with most dementia related illnesses. Unless you have a team of family members at home that can help you, it can be impossible at times. This disease is very relentless, cruel and dysfunctional and it has the ability to destroy you, the caregiver, even though you try so hard. Sometimes, I think this is one of the most difficult parts of the illness, letting go of full time family care and giving it to someone else, an assisted living. It must be done in some circumstances for survival. Dementia needs a team of people
to care effectively for our loved ones. But you can still play an important role while she is in assisted living. You visit often and advocate for her there. Pray often and get balance in your life so you can still be effective for both of you.
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I agree with cwillie and if you were working in a long term facility you would be fired. So, let mom go live in the bed she's made and you get a life before it's too late. No one can find joy when their efforts, caring, cleaning, an adult baby are thought to be easy as distant relative (even not so distant) believe. Mothers often mistake tyranny for love and it's very hard for the children of these mothers to forgive them, let alone be at their mercy. You deserve an award for having dedicated your time for 13 years! If you like your job stick with it. You'll get much more reward for that than struggling with hanging on to mom. Can you video yourself being interactive while doing daily routines? Especially if your angry: if you're verbally abusive and talking bad, she needs to go before adult services are knocking on your door.
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