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My father passed away last October of 2023. He was diagnosed with MDS last May of 2023. I more or less moved in with my parents at that time. I have also been married for almost 39 years. My husband was a trooper and still is. I cared for my mother and father both during this time. On August 7, 2023, I had to make the choice to call Hospice for my dad because the choking and pain was too much. He became bedridden but my sister and I cared for him for 6 weeks until he passed. After my dad’s passing, my sister abandoned me. Now I care for my mother who has chosen to go on Hospice because of COPD and she’s on oxygen 24/7, she has stage four osteoporosis. She has made the accusation that am mentally abusing her. She is a very moody manipulative person and has everyone believing she is an angel. I have been here in my parents house for almost a year. I have illnesses such as my hair is falling out, I have severe eczema in my head, I have lumbar sacral disc disease, and other illnesses. I have no help at all. I asked her if she would be willing to go to respite care for a week and her response was, “I will kill myself if I leave my home.” My body and mind are in terrible shape because I haven’t had a break what so ever for a year. I am totally burn out. I can’t just leave her. I do love her and care for her, but she has said I don’t love her. Please any advice would be helpful.



totally burnout

I would speak to your doctor and he should be able to advise what help is available. Speak also about the suicide threats. You cant be living under such conditions. End of day - hopefully your doctor/medical person can advise you correctly otherwise the conversation is mum i am ill. I am unable to look after you 24/7. It is a trait elderly making wild accusations. A friend in work's mother always wanted to go on a cruise. My friend/her daughter and her grand daughter accompanied her as she wanted. She complained the whole time - wouldnt eat the food and then told the staff that her daughter was being heavy handed with her and man handling her. My friend started to get looks from staff - she didnt understand why - then the head paid her a visit saying very sternly that she had to stop man handling and abusing her mother! of course they didnt believe her denials. She went to the mother and asked her why she said those things to be told by the mother - oh i was just playing!!!
My fathers decline came like over night with his knee going. Hes much better now - vitamins do help and healthy eating btw - hes back to full mental awareness etc - anyway - when he went into decline he decided that he didnt need to wash or change anymore!! - I walked into the house to smell urine. It was awful. When i spoke to him about it - he was in denial and actually accused myself and sister of bullying him. My sister is a no nonsense very respectful personality and she just ignored him and treated him respectfully and he stopped it. Terrible unreasonable behaviour. Elderly get notorious for behaving badly. I didnt manage it too well and had a break from my dad as in the beginning it was just making me ill. My sister was just firm. Told him firmly she was not abusing him and he had to wash and she was setting some water now. She also was very firm about him getting off the chair - he resorted to not moving from the chair unless he wanted to go to the loo - refused to walk and his bones were seizing up and it came to point every time he wanted to get up someone had to stop what they were doing to help him! - and it was often. My sister was very firm in telling him to get up and walk up and down the room a couple of times. Hes now walking without a stick showing off saying look at me - no stick even tho we say just take it along anyway. he can go up and down the stairs by himself again now. It was all about being very firm - but respectful and monitoring the health eg - if for example you see the person panting and out of breath - make the exercise shorter and then reward them with a nice cup of tea afterwards and a congratulations. Now my dad is happy and because hes mobile again changing and keeping clean is in his daily routine. Its all down to firmness - if you are unable to (i wasnt able to) then get someone who can - doctor - health person? My friends mother went into a home - it was a bad transition and accusations about abandoning her etc - now shes in there - shes taken the role of leader with the other pensioners and they follow her around like soldiers..shes in her element and has care 24/7 and company.
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Reply to Jenny10
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I would tell, not ask.

Tell your mother that you have scheduled five days off for doctors, so booked a place that can monitor her.
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Reply to PeggySue2020
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Taking care of yourself is just as important as taking care of others. Consider seeking support from professionals or help services that can offer resources for caring for your mother and help you take a break. An opportunity to discuss your situation with a therapist or counselor to receive support and stress management strategies. Your well-being matters and you need support during this difficult time.
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Reply to RigoboMaldo
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You have been through hell from the sound of it. I would echo others and say don’t waste any more effort trying to convince her that you need a break. It’s a fact. Put her in respite care. Don’t visit for at least two weeks. keep calls really brief, like less than 10 minutes.

she might even like it there after a couple of weeks.

good luck!
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Reply to Suzy23
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People who are moody and manipulative don't have the capacity to understand the needs of others, so don't even waste any energy trying to get her to understand why you need a break.

It's past time for you to return home to your husband and family. That's not being selfish. Your first allegiance is to your self and your husband and children. You can still love your mom without sacrificing yourself and your health to her.

After all you've done - for her to make the accusation that you are mentally abusing her, well, that would be the last straw for me. I would step way back.

Put her in respite care no questions asked "because the doctor says so", and get some perspective on your situation and decide if it should be temporary or permanent. (I would vote for permanent.)
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Reply to Dogwood63
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Myrtie, I just read your reply to me. Thank you.
I don't think that you're being selfish - that would be a deliberate action - but you just haven't looked at the situation from this angle before.
Now that you have, I hope that it gives you the strength to put you and your husband first.
It's a difficult thing to do when you're not used to making yourself a priority, but realising the sacrifice your husband is making might help you to see that you shouldn't sacrifice yourself either.
I'm wishing you strength to make the decision that's right for you, and for you to not be burdened by misplaced guilt when you follow through.
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Reply to MiaMoor
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Respite help her to get used and comfortable to it you have to be powered up yourself
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Reply to Dawnee68
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Most of all believe and pray Do you think you can get a counselor or minister to talk to your mother with you that maybe she will trust in the process that it's all gonna work out and for good Because if you can't be calm and feeling her uncalmness it's pressing you out as much as you can keep trusting and believing that God shall work it out maybe play soothing calm music around her I probably would still look into respite if you have to be with this person and help your mom to get used to them but assure her you will be back but you have to give time to your husband but letting know I love you mom just got to do a few things outside the house just keep trusting the Lord that he's gonna help in every matter God bless you all if she rant on just reverse the conversation it's gonna get better don't give up on her I know you won't she's battling herself💖
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Reply to Dawnee68
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She will not kill herself if you leave her and get some rest.

That's a cheap, mean way to manipulate people into getting what you want. I was raised on the constant fear that my mother was going to kill herself and somehow we kids would be held to blame.

She never even attempted any such thing.

Stand up to mom. Take your break and think a lot about the situation you are in.

It really is probably PAST time to place mom.

My mom could also be a sweetie--but she needed to be the center of attention. When i developed cancer, and I went to tell her, she made it about HER.."Oh, poor me! My baby has cancer!" And she didn't speak to me for a year.

PLease take care of yourself. I personally have a really hard time putting myself first, so I know of which I speak!

I see so many people simply destroy their lives for perceived needs of others. You can be a hands off CG and still care for her, but also have a life of your own.
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Reply to Midkid58
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I just tell mom I have not gotten any sleep and need to go home and see my grandchildren and visit my home. She understands. She gets irritated and immediately when I come back questions where I have been. I also tell her I have gotten no sleep and need to take care of my health. She understands.
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Reply to Rogerwyatt7890
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You don’t ask her…just do it. You don’t need mom’s permission. Put her in respite care for a week & take a break. Maybe if can then be long term. Hugs 🤗
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Reply to CaregiverL
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First, make an appt with your doctor and get checked out—and possibly you need medication. You might need a therapist who specializes in trauma, also. Caregivers may suffer unrecognized trauma. Also consider joining a bereavement group. Hospice offers such care for family members of the departed or ill person as well. Has your mom been screened for cognitive impairment? Can you afford a PT aide or does she qualify for one financially? Would she spend time at a community elder day care some hours/day? While she naps or an aide comes can you retreat on property to rest and recreate or walk around the neighborhood? If she is in hospice she may go into a hospice facility for up to 5 days because you need a break. Take up guided meditation through an app like Instant Timer. Get up an hour before she wakes for coffee and quiet time for you.
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Reply to JeaneRose
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Rogerwyatt7890 Apr 22, 2024
I have Home Health coming in 2-3 times a week. They agree she needs to be placed but her dementia waxes and wanes so much. It seems when people come over she is perfectly fine ARGG.
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Myrtle, I have just read that you are moving your mum into your own home. Why?

If it's because of financial difficulty and you have no choice, then I sympathise.

Otherwise, don't do it!

Your mother is manipulative and an emotional blackmailer. Do you think that she will be any easier to deal with in your own home? That will just leave you with no safe haven to return to.

Don't ruin your own health and peace of mind.
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Reply to MiaMoor
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My answer will seem harsh, so I apologise in advance.

If your mother kills herself, then she kills herself. That is her choice and nothing to do with you. Emotional blackmail is a horrendous thing to do to anybody, especially a child who has given up their life to take care of you.

Stop caring for your mother now!

Even though it may well be her poor health and cognitive decline talking, if you taking care of her isn't making your mum happy, then what is the point in you making yourself ill and harming your relationship with your husband? I know he's been a "trooper", but you're not together.

In fact, you should not be sacrificing your life to take care of your mother - full stop. That isn't what us parents want for our children; we want them to grow up and live their own lives, as happily as possible.

Be firm. Tell your mother that you love her but that it's time for you to live your own life, with your husband.
Make arrangements for your mum's care and leave.

I doubt that your mum would really take her own life, but if she does , then it's on her. Not you. You're not responsible for her decisions, nor her happiness.
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Reply to MiaMoor
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partnerwife1 Apr 22, 2024
I love your answer! Reading it has urged me to move forward with care for my husband. I have had a terrible year in my own health and when I made arrangements to go out of town- he refused to leave home for his "retreat" in respite care. I am paying the p0rice while King Baby is just "fine". So done I am loosing my compassion for others.
Thank you for your blunt honesty!
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Make arrangements with a home health agency to care for your mom - using her money - so you can attend to your health needs. If she doesn't have the money, ask other family members to step in for a specific period of time.
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Reply to Taarna
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Myrtie: She must go to respite care, else your health worsens.
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Reply to Llamalover47
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How can we work it out for you to work it out??
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Reply to AdVinn
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I also developed severe hair loss, eczema, and terrible lower back pain while trying to do it all. That was my moment of clarity. I should have paid more attention to my own health during the lead up, but my mom didn’t want to leave her house. My husband was understanding, but my marriage suffered. Mom has been in AL since August and she’s happy, or as happy as possible. I’m much happier, my life feels more like my own. My marriage is back where it should be, we go away for weekends and spend time together. Your mom might throw a fit, but you are entitled to have a life. She will get used to her new life and it’s time for you to live yours.
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Reply to LoriF1
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You need to stop taking this so seriously. If she says I will kill myself if .. you don’t do what I want, the correct response is “Oh really”. And laugh. If she says that you don’t love her, the correct response is “Well why would I, when you act like this?”. And laugh. If she says that you don’t care for her, make it true. If you stop, there is a chance (perhaps slim) that she will realise that you do a lot of care for her. She may be bossy, but she is not your boss.

You get her to understand that you need a break, by taking a break. Not by toeing the line. Waiting for permission is a waste of time.
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Reply to MargaretMcKen
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You’ve reached the bottom of the caregiver barrel. You are experiencing significant symptoms that reflect being totally worn out. If you continue this path you may become too ill to take care of her, or even pass before she does. Who will take care of her then? It’s not selfish to want to take care of yourself. You know she is a manipulative person so saying you don’t love her is one of her tactics as is saying she will kill herself. Look for the very best AL facility or SNF for her. Visit her frequently. The hospice people should be able to provide you with information about the best places for her. They work in various facilities and have seen the best and the worse. Not all facilities are the same. Medicare rates nursing homes zero to five stars. It’s a difficult step for everyone but something needs to change.
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Reply to katepaints
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Dear friend, it is a terrible burden and you have done your part. Bless you for your kindness. Everyone always says we should take care of ourselves but how can we do that? I wonder if it helps to know that you have already earned a break and that it is the dementia speaking through your mother? Although caretakers know this, we so often feel the pain nonetheless. I hope that the preponderance of advice here can convince you to take a break and not take your mother's emotionally charged words personally. If you do manage to get out and get a break, please post this and it will encourage others to do the same. Bless you.
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Reply to Calliesma
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Myrtie, in your response to NeedHelpWithMom you said that you are moving your mother into your house. You should probably look into facilities in your area so you will be prepared if she starts to make demands of everyone that end up driving your family apart. I have a good relationship with my mother but both of us know that living together would threaten that. I suspect that you will find her just as difficult and that now everyone else will be dragged down as well. If you can find a care home somewhere near you for her then everyone could choose how much they want to be around her, including you! You could just walk out when she is being unpleasant and return to the sanctuary of your own home and family. If she is being pleasant then you can spend as much time and do as much for her as you like. I hope you are not just moving your problems to a new location but still with you. As everyone has said, you deserve a life as well!
I hope things work out for you!
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Myrtie Apr 21, 2024
Thank you for your kind response to my post. My husband and I are working closely with my doctor, my mother’s Hospice Social worker, and an elder nursing home coordinator. We are doing this for a trial run. We told my mother that we would give it a try. If it does not work out, everyone is on standby for the move. I have also, since my first post, sought out counseling for myself. I should have done this 6 months ago. I know now that I am not a super human. I will post again to let everyone know how this trial run is going. You all are so kind. I’m so thankful I signed up for this. ♥️
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Tell her that she’s going to respite care. Don’t ask. Just tell her that you need a break. You do, for your own mental/physical well-being.
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Calliesma Apr 22, 2024
I do believe it is perfectly acceptable to lie (lovingly) to our dear ones with dementia. We can say we are being directed by the doctor to get a treatment for 3 weeks. Heck, you can say you're going to a hospital for an operation. If this is more acceptable, it is less painful than saying "you're stressing me beyond my capacity to bear it."
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Taking care of her is destroying you. It's time to place her in a facility and get your health and your sanity back. NO GUILT. You cannot sacrifice yourself for anyone, even a parent. That is not love, that is guilt. If you love her and yourself, you can put her in a place that will take care of her and allow you to breathe and resume the life God gave you.
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Reply to MDJones
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You have to look at it this way WHAT IF YOU WEREN'T THERE where would she be probably in a nursing home.

Number one is for you to take care of yourself because you have a family and that is more important than taking care of her. Stop enabling her.

Please take care of yourself. Yes our parents took care of us but in the end losing your health or life isn't worth taking care of her. There are places for her to go. We all love our parents but there is a time where we have to take care of ourselves first.

Prayers
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Reply to Babs2013
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Dear Myrtle, I have been in your shoes and my heart hurts for you BUT forget trying to make her understand because nothing you say will matter to her. Maybe you are her prisoner but if you don’t find some home health to come to your home regardless of her reaction you are killing yourself. This forum has helped me see my worth and this is my 2nd day of freedom in over 10 years. Please listen to these people who will help you-they know what they are talking about! Look online for agencies that come to your home. I wish you hope and love
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Reply to Aprilfool
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Myrtie Apr 21, 2024
Thank you for your kind words. When I called the Social worker for Hospice, I have help in the makings. All I had to say is that I’ve had enough. All the advice I have read has helped me so much. I still have a ways to go, but I’m more positive now and I know what I have to do. My mother is a narcissist and my sister knows that. I understand now. I just feel bad it’s taken me this long to find out. But I know now. The ball is in my court now and not hers. I will post again to update. God Bless you.
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Self care is important and you have to do what you have to do regardless of what your mother says. You will be a better caregiver if you take time for yourself sometimes. There's a lot of Truth in the old saying that says you can't care for someone else until you care for yourself.
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Reply to Lily4Jesus
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You can't make her understand. And she doesn't have to.
You do what is right for you.
You can not continue caring for someone else without a break to take care of yourself. You may not be able to continue at all. Only you can determine what you are capable of.
She is manipulating you with guilt, to try and make you do what she wants.
That is unfair to you, and something no reasonable parent would want to do to their child. She is not acting with reason, and you can't reason with her.
You have to make this decision on your own, and just do it. You can not control how she will respond to it.
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Reply to CaringWifeAZ
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Hospice wanted me to put spouse in respite. Almost did it. My friend came down and said NO.
She asked for my C:C number and got my angel . He took over. I was able to let my guard down. He made sure he was comfortable etc.
he didn’t miss a medication.
I was able to be by his side when he died. I would’ve felt guilt beyond guilt if I removed him for those few days..
if you feel you need a break, get a care agency and determine what can you afford for a week or however long. If you need more time, then place her permanently in assisted living.
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Reply to MAYDAY
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She will never understand or agree. However you are the boss now, as she is unable. Take her to respite or better yet, place her in a facility full time that can care for her.

You have taken on too much and must consider your own health now.
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Reply to Donttestme
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