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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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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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!
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.
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.
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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