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I love your post! We’ve had those kind of comments before , not on here but in person or text. We say we’ll you can come caregive and have her in your home or love with her, then it’s silence from them. What you said is a situation we are going through right now. Very nicely put!
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I surrendered when I was diagnosed with cancer after almost 10 yrs of caregiving. 8 yrs just for my mother. It ruined my health, and I was still hesitant to throw in the towel. But if I didn’t stop, I wouldn’t be here anyway. So I called it quits. Hospice stepped in for my mother and they have been a God-send. I have no problem handing her over to them. If she becomes bed-bound, she will go to the hospice center for the remainder of her time. I cannot take care of her when no one else is there. Hospice doesn’t do full time in the home. I am no longer a martyr. I have stage 3 cancer. I need to fight for myself.
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notrydoyoda Dec 2019
I pray that you win your fight! Thanks very much for sharing.
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Last year we approached our vet about an aged cat who had rapidly failing kidney problems, asking 'when is it time'. We were a little shocked when she said 'if you have to ask, then it means it is time.' We took our old friend home but it was only a matter of days before we realised she was right, so we sent our beloved moggie to the ''heaviside layer''.
Earlier this year a difficult set of family circumstances meant we had to place our mother into Respite care for a fortnight. The first night she was discovered continually wandering in search of the non-existent music; walking into walls and not knowing how to turn around; and looking for her mother who had died more than 40 years ago. Within just a few hours she was identified by RN as needing to be in a memory care unit. She had well and truly crossed from mild cognitive impairment into dementia, but had been hiding her symptoms very well - either that, or we were blinded by our promises to never place her in 'one of those dreadful places.' We thought her behaviour eccentric but what else does one expect from a 93 year old? And there was our always our ''promise''.
So we rocked up to her regular GP asking 'when is it time?" Would you believe his response was almost the same as the vet's regarding our cat? ''The fact that you are asking means that it is long past time!" He had been suggesting the idea of moving into assisted living to my mother for a number of years but she resisted - vehemently. "Family has to look after family" was her way of guilting us into compliance with her wishes. The GP said she was extremely lucky to have been looked after so well at home until then, that most people throw in the towel much earlier, unless they are gluttons for punishment or just plain naive. That ''love'' has nothing to do with it.
The GP's advice was grasp the opportunity to leave her at the aged care facility where they had a lovely room available in the memory care unit, otherwise it would be doubly difficult to both prise her out of my sister's home where she was then living, or to surrender our caring roles. In that instant we indeed surrendered our ''carer'' roles and became ''just family'' again.
How did mother take the news? We have never really told her. Like so many dementia patients, she hates it where she is and just wants to go home. But she has no concept of what home is. At times she is sufficiently ''with it'' to still try guilting us, that family should look after family, that we want her to die so we can have her money.....you name it, she has, and continues, to try to shame us into taking her home.
Not quite the final trip to the heaviside layer that we sent our beloved moggie along, but the relief for us has been incredible. Is it still stressful? Of course it is! But we can now walk away from the facility whenever we want, knowing that mother is well cared for. We recognise she will never be happy there, but her happiness has to be overridden by her safety and need for heavy nursing.
The more advanced her progressive dementia becomes, the more we realise we did do the right thing for our mother. It was, indeed ''time''.
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lealonnie1 Dec 2019
So poignantly written. I'm sorry about your dear Moggie, but glad your beloved pet is free of pain now. And glad for you that you placed mother where she can be properly looked after and where you can assume the role of daughter again.
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Lealonnie1....thank you, you know from where you speak. I always appreciate and look forward to seeing your comments. Hope you have a blessed holiday season....Liz
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lealonnie: Well said! I "almost" went off the rails caregiving out of state. Good grief - I even swallowed a hearing aide battery!
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SnoopyLove Dec 2019
Wha...? You swallowed a hearing aide battery?!! That's got to be a story!
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I can answer this very simply. When the day comes that the burden of being a caretaker affects the caretaker in a negative way, mentally and physically, or if it is having a bad impact on the rest of the family and the overall living atmosphere of the rest of the family or caretaker, and the behavior and needs are causing a major toll on everyone, then that is WHEN YOU STOP BEING A CARETAKER. In most cases, it is the elderly who are being cared for by the younger members. The younger members have every right to live their lives - just as the older person did before all this happened. Under no circumstances, no matter who it is, or the relationship, no matter what, when the impacts are causing negative consequences, that is the end - the person must be removed and placed somewhere. End of story.
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azilmedia Dec 2019
Thank you for that message. My family (me, husband and two daughters) took care of my mother for almost 6 months after she fell a year ago October, went into hospital then rehab, then our home. Then she had a stroke in February 2019 which affected her cognitive part right frontal lobe (she already had stage 6 dementia or thereabouts). Went back to hospital for 5 days or so and was being discharged. It was recommended to send her to rehab but we took her on. Everyone in hospital said that it was a commendable gesture to take her home. Unfortunately, two and a half months later, she was mean to my younger daughter (21) by saying to her all you do is eat (my daughter was on a meal plan recovering from an eating disorder). I realize it doesn't sound like much, but for those families that have dealt with an eating disorder you know what that felt like to you the parent watching a recovery. I was so upset with my mother and although she didn't know what she was saying, I had to put my 21 year old first and place my mother in a facility. Your words mentioned above were said to me. She has lived her life (she is 87) and you need to think of your family first. Unfortunately for me, my rushed choice to place my mother came with many other types of stresses of neglect. I toyed with the idea of bringing her back with us, but i kept thinking of the unintentional damage that she would do to my daughter. I took the selfish way and am having her transferred to another facility and praying that it will be a different experience. I realize no one takes care of our LO like we do, but I am hopeful that this will be a better experience.
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I totally agree with you lealonnie. No one ever said that to me but if they had I would have given them what for. It's never an easy decision when you realize that there is nothing more you can do by yourself for a loved one. When you've exhausted all other alternatives. The home health care visits, the lifeline button that your parent would probably forget to press when they needed to anyway. Yes, they say the fall will activate it but you still sit at home and worry and wonder. The countless visits to the E. R., and on and on it goes.

And even when you have them in a nursing home, you second guess and second guess yourself for having to do it. The staff at the nursing home. Are they taking good care of your loved one? You always wonder. And worry, and wonder.

No, it's not an easy decision. Never one made lightly. No one should criticize.
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My husband was 76 with Parkinson's and Lewy Body dementia. He could walk but with some difficulty. He would get into the refrigerator and I never knew what I would find when I got up. He once put 4 eggs into the microwave to cook, in their shell. It took me 2 days to decide how to clean it up. A friend had given me 4 qts. of blackberries. I had them in the refrigerator and I was protecting them from him. I laid down chair to make a barrier that I thought would keep him away. He climbed over them and was moving things around. I tried to get him to stay out of it and I had been up for over 16 hrs. with him. He started throwing things and tried to turn the kitchen table over. I redressed him and took him to the nearest ER. As I explained to the attending MD, I was at my wits end trying to take care of him. After a week in the hospital he was placed in a nursing home that excepted clients with his type of dementia. He stayed about 9 months. He was in a closed unit but he no longer could walk, although he tried many times and fell. He smelled of urine and stool all the time and was wearing his food, even though I had asked that they put a bib or gown on him. I was there a couple times of week and took grandchildren and children with me. After 9 months I brought him home and made up my mind to care for him myself. He still tried to walk and fell. My son lived with us and agreed to help me with his care. In doing so he was trying to get him to sit down and his hand slipped off of his shoulder and he broke his hand and had to have surgery on it. I couldn't get him up off the floor without his assistance(my son's). My husband was losing the ability to stand using pull bars, so that I could change his diaper and clean him up. We decided to put him in bed. He occassionaly tried to get up but couldn't go anywhere. That was this past Jan. In April at a doctor's appt. he was placed in hospice. I didn't have a ramp so it was difficult getting him down concrete steps to the car. In hospice we got a hospital bed and all his care would be done in our home. It was difficult at times changing him and trying to get him to take his meds. Medications helped with his agitation that people get with his condition. As he got more sedated I had to back off of meds so I could get him awake to take fluids and eat. He just died on Nov. 24th. I and our son was by his side. Hospice RN and my 3 daughters arrived about 5 mins later. I felt bad about putting him in the Nursing home. And although he wasn't as clean as I would have liked, he was treated with kindness and well fed there. I made the decision to bring him home and try again to care for him. I don't regret that decision one bit. I felt blessed to be at his side when he took his last breath. He had been doing poorly for about 5 days. Hospice was coming every day to check on him. He had turned around a little the day before he died. I had meds to help relax his breathing and help with the congestion. I could give him breathing treatments, that in the past had helped. I knew as 2:00 a.m. that things were not good, in that his breathing had changed. I tried calling hospice and my daughters. I gave the meds and a breathing treatment but it didn't turn things around. At 3:12 a.m. he took his last breath. His body had the smell of sweet rolls cooking in the oven. My oldest had been here earlier and she said she smelled that at that time. He didn't struggle hard. He just slowed down and his body gave out. I still look in the area of where his hospital bed was before I go to bed and when I get up in the morning. My son does too. I had planned a cremation for him and myself, when the time comes. When they came to pick him up the hospice nurse advised them that he was a veteran and turned the colorful cover for their gurney over to display a U.S. flag. I was very moved. Hospice will be providing me with assistance and moral support for the next 13 months
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lealonnie1 Dec 2019
I'm so sorry for you loss, Lady. Sending you a hug & many thanks for sharing your bittersweet story
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Lealonnie1 thank you for such an eloquent way of describing what I personally am going through right now. My sister and I have been taking shifts living with my parents for almost a year now. Dad has Parkinson’s and mom has late stage dementia with aggression. It has not been a good mental or health situation for any of us. My sister and I have dissolving family and marital relationships. Our health has deteriorated. I’m on antidepressants and our hips and backs ache. We feel as if we are not daughters anymore, just caretakers and maids. We love our parents! That’s why we’re here! Dad started out healthier than mom but if we continue like we are he’s going to falter soon. I’m praying he listens to me about placing mom in a memory care facility as I will not last much longer. We’ve tried, we can’t take much more and if anyone tells me we’re wrong to place her, I’ll dissolve. There are so many different situations that no one has the right to judge. Thank you for sticking up for families that must find the best situation for themselves. 🙏🏻
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Frances73 Dec 2019
Have you looked into respite care? Medicare and most insurance covers a weeklong stay in a facility to give caregivers time for a vacation or just time away from the patient. It could act as a first step in getting your Mom placed and let you Dad see the type of care she would receive.
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I dunno...I feel that the forum is pretty quick to say “put them in a home where they belong, get a job, support yourself!”

It always makes me question if I’m doing the right thing, as if I don’t already question myself.

The thing for me is that my mom is mentally, not alert anymore but not demented either. It’s her body that’s failing her and that’s because she’s so afraid of falling she doesn’t exert herself anymore.

I question whether I’m doing right staying at home with her because she could use the social stimulation, she needs physical therapy that she would actually do, and she doesn’t trust me to lift her, saying that if I hurt myself then we’d be in a real pickle.

I question also how long she would have to be placed and will her funds run out before she passes. I question how she could survive in an environment where she’s the only lucid occupant.

I know that I have it real easy here. Even when she has the need for extra care she’s not too difficult(once we get back from her crying and not even trying to help herself.)

Face it, I don’t have anywhere else I’m supposed to be and my duties have more to do with the house which would disappear if she was in a home.

My mom has always been my staunchest support and my best friend, too. She never gave up on me and I don’t intend to abandon her until she has more needs than I can help her with.

She always thanks me for my help and as a matter-of-fact holds off asking me for help for reasons I can’t comprehend. She also makes out as if she’s fine but when we get a visitor, she’ll ask for all kinds of things. Or when she’s on the phone I hear a completely different version of her health status. I judge by how she’s moving which version is correct.

In my mind I foresee the possibility she may need nursing at home and I still see myself here helping with the house and being her advocate.

Unfortunately, my sister has medical poa and she is a lot less sentimental than I am. I’ve imagined that it would not be difficult to have an elder declared incompetent just by virtue of not communicating well because of hearing loss and poor eyesight.

My sister sometimes asks if I’m no longer able to care for mom or if I’ve come to the end of my rope. I always give her a flip answer but later on I wonder, “ What are the alternatives?”
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notrydoyoda Dec 2019
Sounds like you are pondering in the right direction, but that your very close emotional bond with your mother as your best friend is making that hard to find closure on. Evidently, your sister does not share such a bond and is able to be more objective. Your sister is concerned about you and ya'lls mom.

I'm sorry people view placing someone in a nursing home as abandoning them for there is still things to do, just not 24/7.
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OH MY GOSH! I almost can’t believe that I am reading this right now!! Minutes ago I was feeling so despondent about my situation. And although intellectually I know I can’t care for my mom in my home, emotionally I am having a very difficult time with it. Hearing hurtful and insensitive comments that place judgement is just making it worse. I just said a prayer asking for some kind of support. And low and behold this is what I stumbled on!!! THANK YOU. THANK YOU. THANK YOU. People really need to stop judging and realize that we all have limits. We all have responsibilities and it is old age and physical decline that places our loved ones in care environments.
I have been hurting and struggling for so long now I don’t even remember what it feels like to be truly happy about anything. There is always a dark cloud hanging over my life. That looming sense of dread and fear. I’m so tired of feeling this way. I look at others without parents to care for and wish I were them. I wonder what I did to deserve this fate. So when others try to judge and blame they should step back and realize the damage they are causing. And think maybe, just maybe everyone’s situation is unique.
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lealonnie1 Dec 2019
Well, God must have led me to post this because He knew YOU needed to read it!!! Glad the post & more importantly, all the great comments have helped you, dear woman. Wishing you all the best as you take steps to regain your life and place your mom in care. Don't feel despondent......and don't forget, you can visit as much as you'd like and bring her small gifts and lots of love!!
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Thank you. I have regrets almost daily about helping mom to assisted living. But then I recall the mess in cleaning out her house and knowing she was not capable of keeping it clean, doing laundry, cooking nutritious meals, paying bills, etc. And she was constantly timing her meds to suit herself. She was home alone all day with most neighbors off to work or school.

Add in that the cost of maintenance exceeded her income! Needed repairs would have wiped out her small savings. I researched senior apartments but there were 5-7 year waits for a place near family. And she would still need to pay for housekeeping, home aids, and all her other expenses.

At age 92 it made sense to find an Assisted Living placement near my sibs and myself. She toured several and selected this one herself. We sold her house and contents and now she has a comfortable income that covers all her expenses. If she outlives the money the AL has Medicaid placement as well as a partnership with a memory care facility nearby.

We visit regularly, take her on outings and keep her involved. And now we get to enjoy this stage in our lives, just like she did, with travel, grandchildren, friends, and hobbies.
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I think it's emotions vs wisdom.
Some people feel guilt inside for placing parents.
But when you think about it, what's better? Sitting at home lonely and depressed, or being in a place with friends and activities?
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TekkieChikk Dec 2019
Well said. I'd choose friends and activities over a lonely apartment any day. Add in the additional benefits of having 24/7 staff available to manage your meds, assist with showering, prepare your meals, do your laundry, clean your room, provide social activities every day, and offer cookies and snacks at night and it's a perfect living situation.
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Thank you for your honest words. I have suffered from attacks like that over placing my 85 year old mother in assisted living. My family tried to take care of her at home. We made a daily care schedule. Family members signed up for care time slots around the clock, as we had been doing for two months before Dad died of cancer. But, we had all used our sick time, flex time and vacation time up. We ignored our own homes and needs to be there. We simply became exhausted with caring for Mom. We all LOVE her. We all gave the maximum to ensure that she was fed, bathed, comforted and provided for in every way we possibly could do with the resources we had available. Yet, we could not do this for years. As you said, the "sheer necessity" made us choose assisted living. None of us wanted it or like it. We really do not deserve a guilt trip about it.
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Well said!!!
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If people making the accusations stopped to think about it, they would realize that care in a facility is expensive, and a greedy person wouldn't be willing to spend the money needed for placing a parent in one.

When my maternal grandmother was alive, she said that the people who know you well understand what you do and why you do it, but the other people who don't know you don't have any say anyway and their opinions don't matter.
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NeedHelpWithMom Dec 2019
Your grandma was very wise.
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Thank you, very well expressed
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Very good post - the answer isn't always having elders to live with one, or to take on their needs. If a good suitable facility is available who care for the LO, so that your visits can be good family time this IS a much better option, and putting guilt trips on people who opt for this is despicable, they are doing what is best for their family.
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I was helping an elderly relative after her son and grandchildren would not step up and help her after a fall and back injury. Her health issues are numerous and the needs were many and constant. It became obvious she needed AL, but she REFUSED to go and insisted on living in her house, trying to manipulate me and one granddaughter into staying with her at night. We helped her tremendously during the day, but both refused to stay at night as it would have been a full-time job requiring us to give up our lives to enable her to do what she wanted. Also, when one stays with her at night, one gets no sleep at all due to her night owl activities which include watching TV late at a high volume, and getting into her kitchen and loudly making a snack at 2:00 a.m. EVERY NIGHT.

Her Sunday School teacher got my phone number and initially started calling me to "check on her." But soon it became obvious she was calling me to attempt to convince me to stay with my this relative at night "so she wouldn't fall." After the fourth call of this nature, I blocked this woman who, by the way, wasn't coming around and visiting this relative herself even though she could drive and get around very well.

I got very tired of having to defend my boundaries especially when I was looking after the needs of this relative every day. Eventually I won the passive-aggressive manipulation game and she now resides in AL. Her family and doctors all agree that she would likely not even be alive today if she had not moved there as they ensure she takes her meds daily and on time and she eats more healthy meals, gets far more exercise and has daily socialization. She has made new friends there.

My sisters and I have told our parents as long as they are somewhat mobile and have all their marbles, we will assist in keeping them in their homes or in our homes, but once one becomes an invalid or dementia, it is AL or SNF.
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NeedHelpWithMom Dec 2019
Isn’t that crazy? So Sunday school teacher was hinting at you being a ‘round the clock’ caregiver. Nuts! Glad that you blocked her number.
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I couldnt agree more.
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Never, ever let anyone put guilt trips on you. If you have tried to do the right thing and no matter what you do, it just won't get fixed or work, and if you are being negatively affected, then YOU have NO CHOICE but to end what is going on and make plans to move forward with your life. If that means to place someone, so be it. YOU do not deserve this bad treatment and you must think of yourself. If that means moving on, do it - now.
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Exactly. What's love got to do with it? Safety is another thing. I needed to read this and will reread (especially when those busy wiping their own a$$es are clueless and offer only judgment).
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Hello LeaLonnie1...
I have a single, compound word as my reply/comment to your above note:

* A-freakin'-MEN! *

Well stated, friend.
J.J (in the same boat)
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NeedHelpWithMom Dec 2019
Thanks! I completely agree! Lealonnie is a gem! I always stop to read what is on her mind.
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I totally agree with Lealonnie1's post.  I struggle with guilt DAILY about having to put my precious mother in a hospital hospice, despite her wishes NOT to die in a hospital?  My mom did not want to die in a hospital.  She couldn't be moved because she was in excruciating pain so my family had to put her in the hospital hospice...a decision I regret again, every single day since she passed away last Christmas day there.  I have asked myself what I could have done differently and I don't have an answer but this haunts me each and every day.  Her wish was to not die in a hospital and that's precisely what transpired.  I feel I let her down...especially in her time of need.  She suffered tremendously and had a very painful death which I watched first-hand.  It was inhumane what happened with her.  The promise to "keep her comfortable" by Hospice was not done...in fact, it couldn't have been farther from the truth.  Bless those people who have to make the decision to put their loved ones in a place where they can be looked after 24 hours a day.  It is a selfless act...not selfish act.
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notrydoyoda Dec 2019
I'm sorry for your loss and your ongoing battle with guilt. The first year after a persons death like an important event like Thanksgiving, Christmas or a birthday is particularly hard. May I kindly suggest finding a therapist to help you with your emotions. I wish you the best.
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Thank You Lealonnie!
Bootshop girl is tired. Mama has had Alzhimers 11 years. She has been in Memory Care for 1 year. I am closing our family's western store in the next 2 week's. It has been in our family 138 years. She is the owner. She will never know. I watched over her 7 1/2 years until I crashed. I KNOW Memory Care is best in my head. But my heart is a 1st class rebel. It is Christmas. I'm sad. My husband just said "Honey, all these people are coming. Everyone is a little sad. Let's go get a tree." I just got done reading all these posts. Thank you all so much! I feel better already. We are all in this boat together. If we keep shoring each other up.....this ship won't go down like the Titanic. Bless you all.
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lealonnie1 Dec 2019
Aww, I hope you went out & got a tree BSG! And I'm so glad these comments helped you feel better. Love your statement about this ship not going down like the Titanic..........perfectly said! Happy Holidays!
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Kudos to the OP. My mother is in memory care and missing her home every single day, but my dad, who was part of that definition of "home" for 66 years, is gone. He cared for her single handedly for years because he was honoring the vows he made to the woman he loved with all his heart. If she was still home she'd be heartbroken to wake up alone in their bed every day.

Still, she's in much better health now getting the medical care, the mental stimulation, and the social interaction my dad couldn't give her. I'm freed up to just LOVE her, which is my job and I'm happy to do it. I see her every other day, and I don't have to change diapers which was humiliating for both of us, worry if she's getting the correct diet, or dropping her pills on the floor by accident.

Yes, it's sad to have to leave her home of 50 years, but there are sometimes choices to be made between two less than desirable situations. I know I made the correct decision, and yes,I had terrible guilt, but she's safe, cared for 24/7, and as I said, I'm freed up to love her.
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lealonnie1 Dec 2019
"I'm freed up to just LOVE her, which is my job and I'm happy to do it." Perfectly said JWC!! It's nice to have a burden lifted & go back to being The Daughter again!
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I am lucky in that my family has always said that when we were unable to care for ourselves we would move to AL. My parents moved their parents into AL and I moved my parents into AL. It was just something that everyone in our family knew would happen.
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NeedHelpWithMom Dec 2019
Sensible family!
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It was last minute for my mom that we had to move her to some place because she was wandering where she was.  Neither my brother or myself would have been able to care for her.  So we put her into a place that had a memory care facility.  She did okay there but had to move her due to her long term care policy that she has.  This place is better. My mom has been widowed for 23 years.  She is 88 and will be 89 in January.

Not everyone would be able to place their parent(s) in a ALF or MC facility due to the finances.  It would have to be the last resort, which you understand.  I wonder if people understand that some people can get on medicare and Medicaid, if needed.

I applaud those who are able to care for their loved ones but if the 24/7 care is needed and it messes with your heath and those around you, I would really consider either AL or MC.  Whichever would suit that person best.
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lealonnie1 Dec 2019
Just to be clear......Medicare does not pay for long term care homes at all; it's Medicaid that does. Glad to hear your mom is doing better at the new place!!
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For those who feel that we don't see others here laying the guilt trips on us, how are THESE for guilt trip comments?

"Please don't put her.in a home, that's like having put you in a foster home or an orphanage! It's cruel! "

"How did she cope.when you.were a.baby? Same.way, now it's your turn to tend to.her! Love her and take care of.her no matter what!!!"

"We look at it as she took care of us when we were young and this is the least we can do for her because we love her."

Yep. The Guilt Trip comments are coming in fast & furious these days, sadly.
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Lockett2166 Dec 2019
We are supposed to take care of babies as they are helpless until they grow up. They have a right to live their lives. The elderly have lived their lives and now it is the time for their children to live their lives. If someone wants to be and can handle being a caretaker, fine. However, the very minute the behavior and demands of the elderly impact the lives of the remaining family in a negative way, it must be stopped once and for all. If it cannot be fixed, they must be moved to a place of safety. You can visit and take tabs but under no circumstances allow anyone, out of guilt, to destroy their lives. Never allow that. They should be guilty and feel remorse if they can't see what they are doing to their loved ones.
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Uh, you are supposed to prove your love by killing yourself?  Not moral, nor sensible IMO. How are you going to help anyone when you are dead? It is about fairness, balance and the practical realities.
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