Continued caregiving vs nursing home?

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I've read some 5 year-old posts on this forum that saw a huge amount of controversy. In particular, the question of being paid to be a caregiver for a loved one and/or deserving more inheritance than non-contributing siblings. I am paid to provide care to my parents with dementia, and my parents' Will has me receiving 40% of the inherited estate, while my brothers are to each get 30%. I voluntarily took up the task of caregiving almost 2 years ago. But I had to give up my employment, my home and what now feels like my whole future, to be here for increasingly needy parents. We saw the geriatrician today, who virtually guilted me into applying for long term care for them both. The waiting list for a nursing home is about 3 years, so we may never be forced into making the difficult decision to send them or carry on this immense burden. Sure, it's a burden of love. I chose to come live with them. But I did so before understanding how hard it would be. How tired, how sick and how frustrated I'd become. I'm not saying these things to be mean or disrespectful toward my parents, who still only want the best for me. I say them because it's the reality of my state of mind. And yet, even thinking about applying for long term care makes me feel horribly guilty. I worked in health care for years, attending a number of meetings concerning the state of senior care in the province (Ontario). I can't get over hearing about the rule that no adult diapers is to be changed until it's 75% full. Or about how you'd better be at the nursing home at the crack of dawn to feed your loved one, because the staff sure don't have the time to do it. Shelter animals are better treated than that! My parents wouldn't survive more than a few months in a place like that, and I would probably be more stressed and exhausted than I am now. In-home nursing care could cost even more than placement in AL. I feel caught between 3 evil choices for the future. I'm not sure exactly what I'm asking. But I may be forced to decide between their lives and my own. If I end up placing them in care, the financial burden may put me out on the street with nothing after sacrificing my life. If I elect to keep them at home for as long as they continue to live, the physical and emotional burden will kill me. How the H*LL do I make a decision?

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I am not in a large urban area but I am also in Ontario - my mom went into a crisis bed from a respite bed only weeks after I reached total burn out, and was able to transfer to her preferred nursing home within a few months of that. I never would have believed it was possible but it happened (I have learned people in the community get #1 priority). I hung on far too long because I was certain I could never allow her to go into long term care, and the decision was excruciatingly difficult. Her crisis placement was (of course) in an older, less desirable nursing home and the culture shock was extreme, but even there I saw that the staff took good care of her and her needs were being met. I NEVER saw her left in a wet/soiled diaper, not there and not in her permanent placement. Certainly her care is not equal to the one on one specialized care she got at home, but in many ways the care is superior simply because they have the hands and equipment available to make it so. A dedicated caregiver - like you - can make all the difference once someone is placed in long term care because they are available to fill in the gaps inherent in institutional life. And I can't begin to describe what a relief it was to put down the burden of mom's care, I never realized how crushing the weight had become until it was lifted.
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Reply to cwillie
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Anjolie, if the care you are providing your parents requires you to be on duty 24 hours each day, that is the equivalent of having 4.5 full-time jobs (8,760 hours per year / 1,950 avg. job working hours = 4.5 jobs). Regardless of whether you're getting paid enough (which seems unlikely), the primary problem is that you're already exhausted (re "I chose to come live with them. But I did so before understanding how hard it would be.") You said you have 3 evil choices, but I see a 4th choice, i.e. explain your exhaustion to your brothers and tell them they'll either have to help you provide the care your parents need or your parents will have to pay other caregivers to help you.

Nearly half of all caregivers die before the person(s) receiving their care due to sleep deprivation and physical and mental exhaustion and, based on what you've said and my own personal experience, I think you're headed down that path. Your "contract" with your brothers and parents needs to be renegotiated ASAP. Caregiving is a lot like being a passenger in a distressed airliner -- you have to put on your own oxygen mask before you can help those who are unable to help themselves, else you'll all perish. Best wishes.
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Reply to bicycler
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You sound very burned out.

I am sorry for what you are going through, it really is a damned if you do and damned if you don't situation.

Have you considered having in home help for yourself? Someone to clean, do laundry, prepare meals, sit with mom and dad while you get a break? I had thought about offering a place to live with meals included for the exchange of services. Someone that isn't dealing with anything but chores can get a lot done in a short time.

God Bless you for the care you give your parents. I pray you find some relief from the overwhelmingness of it all. HUGS 2 U!
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Reply to Isthisrealyreal
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Anjolie I think your health and happiness are equally important to your parents and perhaps even more important because you have much more life to live. I doubt your parents would want you to keel over from the stress of caring for them. If you place them, you can still act as their strong advocate, while getting a good night's sleep without being "on duty" 24/7. Listen to cwillie's experience, also in Ontario. Check out some facilities before you dismiss that option out-of-hand. You are important in this world too - you deserve to live without constant stress and worry. You also need to consider your own retirement - are you earning credits for the equivalent of Social Security while caring for your parents? Don't mess up your own retirement by staying out of the workforce. {{{Hugs}}}
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Reply to blannie
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How long ago was it that you attended meetings on the state of nursing home care? Last year? Ten years ago? A little research on the current state of the particular care centers available to Mom might be a good thing.

Placing a loved one in a care center is not washing your hands of their care. You'd still be the advocate seeing that Mom was getting good care. You'd make sure she got all her meals. Perhaps you'd even feed her sometimes if she can't feed herself. You would monitor that she was never left in soiled diapers, always had her false teeth and hearing aides and glasses or whatever else she needs. If she was always cold you would politely but firmly ensure she was always dressed in a sweater. You are still a caregiver but your role changes to one that is far less likely to cut your own life short.

Does Ontario not have any system of subsidizing the cost of care for elders? It is really hard to believe that you would be out on the street! And, of course, you could go back to work if Mom were safely cared for somewhere else. But I am curious, is a nursing home 100% self-pay in Ontario?

My sister and BIL took care of our mother in their home for over a year. It was very good for Ma, but she reached a stage beyond their ability to provide full care. We placed her in a nursing home, fully expected that she might go downhill, but not have a better option. The building was 50 years old, well-maintained but not one of the sleek new modern places. As all such places do they had a high rate of staff turnover, but they also had a core of very long-term staff, many of whom had or had had relatives cared for there. It was the best we could do. And Ma THRIVED there! Not at all what we expected! I think it extended her life span and it definitely increased her contentment. And my sister was GOOD as a home caregiver! But at the end of Ma's life, the nursing home was better able to meet her needs. Knowing what I know now I think it would have been selfish of us to insist she continue living with one of us.
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Reply to jeannegibbs
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An acquaintance from a few years ago, whom I wasn't aware had been caregiving her mother, died last year, broken by the weight of responsibility. I'm grieving her untimely death still, and all these What Ifs and Maybes are coming to the fore. Yeah, I was venting, but also feel deeply worried. And I never want my son to be in the position of caring for me, that I'm in caring for my parents. It's a cruel joke.
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Reply to Anjolie
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We care about you. If you feel that your situation may be killing you, you very well could be right. I felt the same way and realized that it was irresponsible for me not to place my Mom in a facility. If I died, who would visit her everyday and make absolutely sure she was very well taken care of? I have seen wonderful care in long term facilities. Far superior to some home situations. Caring for 2 seniors 24/7 is a massive job. Prayers for you.
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Reply to dmasty
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"I can't get over hearing about the rule that no adult diapers is to be changed until it's 75% full. Or about how you'd better be at the nursing home at the crack of dawn to feed your loved one, because the staff sure don't have the time to do it...."

Is this still the case in Canada at this time, at all facilities? So mandatory dirty diapers and no one is fed unless they have a loved one come at the crack of dawn? So in good old Canada all the other elderly people without loved ones available to come in just slowly starve to death? Really?

I think you need to somehow obtain funds from your brothers or your parents to pay caregivers to allow you to get away for a few good nights' sleep, so that you can think clearly about what the options really are. I think you are so exhausted, burned out and angry about your lost life that you are NOT thinking clearly.
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Reply to SnoopyLove
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Anjolie, as jeannegibbs and, blannie and cwillie said, people with dedicated caregivers, such as yourself, are not abandoned when they are moved into a facility and often thrive due to the increased socialization and their primary caregiver's (your) new found energy to closely monitor and attend to their comfort. I still think the 4th choice you have (renegotiating your "contract" due to new realities) is a good choice, but I also agree with others that your 2nd choice (moving your parents into a good facility) is not at all an "evil" choice and is often the best choice.

One thing that I kept in mind while making the decision to move my dad into a memory care facility was what a long-time Alzheimer's support group facilitator told me, that he never knew anyone who, after placing their loved one in a facility, said that they had done that too soon. He had moved his own 65-year-old wife into a memory care facility after several years of care-giving, but only after their children told him that they didn't want to lose their dad in addition to losing their mom.
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Reply to bicycler
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I’m sorry for the exhaustion you’re experiencing and hope you can find a plan that gives you both rest and peace of mind soon. That said and sincerely meant, a momentary vent here, I really can’t stand the frequently seen on this site lumping together of all nursing homes into one category, that of the terrible facility that kills old people. Just as we can’t stereotype people into one category as we’re all different somit is with nursing homes. Very true that there are some I wouldn’t let my dog go in, but there are also some that have workers who will tell you they feel it’s their calling to work there, and they provide loving, excellent care. There’s no perfect place, even providing care in home isn’t perfect, but there are nursing homes that do good work. Our family simply had zero choice but to use a nursing home with my mom and I’ll always feel blessed that we found one that was kind and caring toward her through an awful time. If this is the route you decide is best, please look around with an open mind, you may be pleasantly surprised that good care is possible.
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Reply to Daughterof1930
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