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Thanks. Respectfully disagree. The priority from a medical perspective is the patients welfare. Incorporating and addressing the families concerns do factor in. Not equal though.
The third party accessment would set into motion some viable options. Keeping the focus on the elder.
But I'm not talking about the priority from only the medical perspective. I'm also not talking about a temporary situation. I'm talking about long term solutions which must work (from a medical, emotional, and financial perspective too by the way) for ALL parties involved. Not just the elderly person - ALL parties who have a dog in the hunt.
My health, finances, and emotional wellbeing, and other relationships, suffered greatly during the four years that my life was consumed - absolutely consumed - by caring for my parents and my husband's parents during their final years. Yes, they were very sick, but they also were not using a lick of common sense- and this was BEFORE the dementia set in. Elder care rarely involves "only medical care" from family members. It's emotional, it's physically demanding, and it's also often financially draining.
I remember very clearly after my mom broke her hip, and after a two week stint in the rehab hospital, they were going to send her home. Send her home. With my sick, elderly dad. Was her home safe? Well, safe enough, I guess. Was it handicap accessible? No. Was she willing to do the PT at home? No. Was she expecting my dad to pick her up, help her on and off the toilet, bathe her, get her dressed, cook for her, clean the house, do all the shopping, etc.? Yes. Was he capable of all that? No. Did the hospital even ask him if he was able and willing to do all that? No. They were just going to send her right on home and let the chips fall where they may. My poor dad called me in tears. "I can't do all that she needs!" he sobbed to me (he was dead himself in a few months). Now, I guess I could have done it - if I'd moved in with them and left my husband to fend for himself. I mean, whatever happens, we can't put Mom in a facility with a professional staff who can keep her safe, with a nurse on staff 24/7, activities, a team of people who are paid to help her bathe, dress, go to the toilet, etc. Why not? Because she wants to stay home! She wants her deathly ill husband to do most of it and when he can't do it, she wants her daughter to move in and do it! Oh, daughter is in her 50s, has recently had surgery on both ankles, has a husband and a full life already - so what? Because Mom wants to stay home!
Sorry - sometimes people are unrealistic in their expectations.
Last edited by KathrynAragon; 07-16-2018 at 10:12 PM..
The problem that I have seen repeatedly is the caregiver of the elder person actually becomes the patient themselves.
The daily stress from the situation, especially when one has no training or background in this area, can be intense. One friend was told by her doctor she had to immediately find another living situation for her mother or she would suffer major medical setbacks herself.
Some I know did not stop in time and ended up dying before their elderly parent. How much did stress play into this? Who knows for sure but caregiving can come in many different forms and for some is much harder than anticipated, physically, emotionally and mentally.
This is really true. My mom had a UTI go septic while she was taking care of my dad. I had to take care of him while she was in the hospital because they didn't have any kind of emergency arrangements in place, and while I was taking care of both of them (once she was home from the hospital) I nearly died from a hemorrhage, because I couldn't find someone to watch my parents so I could get in to see my ob/gyn. By the time I got a relative to come in from out of town and sit with them, I had to have two blood transfusions.
Interesting that people freak out over placing an elderly loved one in a care facility but don’t think twice about placing babies and children in a care facility (daycare).
To be fair -- they don't consider child care a long-term prospect. The child comes home for most of the day, interacts with parents, siblings, etc. And most aren't in day care 7 days a week, plus holidays. Plus, there's an end in sight -- four or five years, max, before a child starts formal schooling. And there's a pretty good chance that your kid probably isn't going to forget who you are from week to week . . .
With elder care, you could easily be looking at 5-20 years -- a significant chunk of time and expense, not to mention guilt imposed by other family members (and often, yourself) for not being able to care for a loved one as people feel they deserve to be cared for. Is a child supposed to give up working to take care of a Mom who has minimal financial resources, thus endangering their own retirement? Giving up working may mean that the child and their spouse may have to severely curtail their lives, moving to a less expensive home or even to a different town, forcing one or more of them to find another job at an age when jobs aren't easy to come by. What about adult children who are still financing the education of their own children? Or those who live in small homes, or homes with an unfriendly layout for unsteady legs?
And then there's the whole guilt thing: "Well, they took care of me, now it's my turn to take care of them." Is it "taking care of them" to keep them isolated at home, often lonely? In 10-15 years, babies turn into fairly self-sufficient young people. In 10-15 years with adults, you are looking at Benjamin Buttons -- an adult gradually turning more and more into a child, with no end in sight. My brother was feeling very guilty because he had promised our dad that "he would always take care of Mom". I had to point out that having Mom in a caring, safe, and secure environment with experienced caregivers who could quickly identify health issues around the clock WAS taking care of her. And it is a damn nice ALF -- nice, varied foods, lovely gardens, well furnished, pleasant admins, lots of sunshine, caregivers who are always popping in to check on her, encourage her to participate in activities, and help her care for herself. She's not as anxious as she was on her own, and frankly, neither are we.
Thanks. Respectfully disagree. The priority from a medical perspective is the patients welfare. Incorporating and addressing the families concerns do factor in. Not equal though.
The third party accessment would set into motion some viable options. Keeping the focus on the elder.
And how do the priorities shift when the family becomes broke when they lose their job doing what is "best" for the elder involved? What does having a daughter becoming broke and infirm, herself, do to "keeping the focus on the elder"? The elderly person is part of a family. Families can bend and flex -- but put too much pressure on them, and they break -- and then you have TWO or more patients to deal with.
The thing is, the elderly want to be "independent" -- they just don't realize that SOMEONE is paying for that independence, whether through paid caregivers or through time and money donated through the family members. My mother wanted to "keep her independence" -- I had to gently point out that she was confusing "independence" with "living alone", and that when she had someone driving her to all her doctor appointments, coming over to cut the grass on her 1 acre yard, coming in to clean her house, doing her grocery shopping for her, taking her to get her hair done, AND stopping by every day to make sure she ate at least ONE meal, that was not "independent." She could live in an ALF, watch TV all day from her favorite chair, turn her nose up at the offered dinners and nap whenever she liked -- just like at home -- but meanwhile, my brother wasn't being run ragged (he and my nephew did most of the running around for her, they lived nearby) trying to manage caregivers and doing as much as he could do on his own, as well as hold down a full-time job and be there for his own wife and family.
And then there's the whole guilt thing: "Well, they took care of me, now it's my turn to take care of them." Is it "taking care of them" to keep them isolated at home, often lonely?
I know elders who are mortified at the idea of their child having to take care of them. It's not the natural order of things, and also there are lifelong dynamics at play. After decades of the parent being higher up in the hierarchy, now they are the dependent one, and that usually doesn't go over well emotionally. Also, the child may naturally revert to feelings they had when they were growing up with parent -- "mom pays attention to sister more than me" or "dad never thought I'd amount to anything and he clearly still thinks I don't do anything right."
Many elderly people are more at peace when they are being cared for by hired help since those dynamics aren't at play.
Plus, not everyone is cut out to be a caregiver, plain and simple. I mean, people seem to think it's like babysitting, and even there not everyone is a good babysitter. People go through training to be CNAs for God's sake.
This is really true. My mom had a UTI go septic while she was taking care of my dad. I had to take care of him while she was in the hospital because they didn't have any kind of emergency arrangements in place, and while I was taking care of both of them (once she was home from the hospital) I nearly died from a hemorrhage, because I couldn't find someone to watch my parents so I could get in to see my ob/gyn. By the time I got a relative to come in from out of town and sit with them, I had to have two blood transfusions.
Oh my gosh.
And you are so right about the all consuming nature of elder care. First both my inlaws became critically ill at the same time - living an hour away. Then both my parents became critically ill at the same time. Back and forth between hospitals and homes, realizing with growing horror that the one that wasn't in the hospital couldn't stay by herself for even one day. Realizing with growing horror that there were really two patients, not one (and for us, at one point, three patients and the fourth going down hill fast). Realizing with growing horror that no one else was willing or able to step up to the plate - it's all on you, baby. Realizing with growing horror that the patients were going to die, imminently. Realizing with growing horror that after the excrutiating deaths, someone (tag, you're it) would have to settle estates. Realizing with growing horror that many family members were vultures and some were even criminal in their behavior and SOMEONE (tag, you're it again) was going to have to be vigilant and proactive and even take legal action to protect other loved ones and their property.
I read so many horror stories on this forum, and heard so many from friends in the same boat, that I remember clearly thinking to myself "Boundaries, boundaries." My husband and I ended up going to grief counseling as well as getting legal counsel, and both were very helpful (and expensive). But not before I gained 35 pounds, along with my husband, he developed gout and high blood pressure, I developed prediabetes and my other bloodwork started getting wonky, and I went completely gray. Completely.
Thank goodness my dad had provided well for my mom's care (she's the last one left and she has dementia) because when he passed away, we were able to put my mom into a memory care facility, which she desperately needed - and WE needed. Even then, we were both embroiled in settling several estates spanning three states - and closing down my dad's small business too. And don't think for a second that Mom's care has been easy, because it definitely has not. (I just spent most of yesterday on nothing but her needs, for instance - it's just ongoing but I've been able to stay on top of it.) But we got the counseling (six months for about $400 a month - wow). It was very helpful. We lost the weight. This past month, my bloodwork came back PERFECT. My husband's gout is gone, though he kept the high blood pressure (and I kept the gray hair).
But it was only - ONLY - because we had the ability and means to back off, regroup, and focus more on our own lives.
To be fair -- they don't consider child care a long-term prospect. The child comes home for most of the day, interacts with parents, siblings, etc. And most aren't in day care 7 days a week, plus holidays. Plus, there's an end in sight -- four or five years, max, before a child starts formal schooling. And there's a pretty good chance that your kid probably isn't going to forget who you are from week to week . . .
With elder care, you could easily be looking at 5-20 years -- a significant chunk of time and expense, not to mention guilt imposed by other family members (and often, yourself) for not being able to care for a loved one as people feel they deserve to be cared for. Is a child supposed to give up working to take care of a Mom who has minimal financial resources, thus endangering their own retirement? Giving up working may mean that the child and their spouse may have to severely curtail their lives, moving to a less expensive home or even to a different town, forcing one or more of them to find another job at an age when jobs aren't easy to come by. What about adult children who are still financing the education of their own children? Or those who live in small homes, or homes with an unfriendly layout for unsteady legs?
And then there's the whole guilt thing: "Well, they took care of me, now it's my turn to take care of them." Is it "taking care of them" to keep them isolated at home, often lonely? In 10-15 years, babies turn into fairly self-sufficient young people. In 10-15 years with adults, you are looking at Benjamin Buttons -- an adult gradually turning more and more into a child, with no end in sight. My brother was feeling very guilty because he had promised our dad that "he would always take care of Mom". I had to point out that having Mom in a caring, safe, and secure environment with experienced caregivers who could quickly identify health issues around the clock WAS taking care of her. And it is a damn nice ALF -- nice, varied foods, lovely gardens, well furnished, pleasant admins, lots of sunshine, caregivers who are always popping in to check on her, encourage her to participate in activities, and help her care for herself. She's not as anxious as she was on her own, and frankly, neither are we.
Amen, amen, amen.
I get so frustrated when people compare elder care to caring for a small child or a baby, using that line "They took care of you, now it's your turn to take care of them." We've talked about this many times on this forum but I'll recap it.
Huge difference between a 10 pound baby and a 110 pound (or 210, or 310 pound) adult. Huge difference between caring for a cute little child when you're in your 20s or 30s - and caring for a sick, often angry parent when you're in your 50s, or 60s, or 70s. Huge difference in the dynamics between a small child and a parent - and an adult and an elderly parent.
I've said this for years - when we're kids, we are under our parents' authority. They make the living, the income, and they are clearly in charge. We live where they tell us to live, move if they tell us we're moving, usually based on mom and/or dad's job(s). We eat what they tell us to eat, wear what they tell us to wear, go to school when and where they tell us to, etc. etc. They are in charge, and we are under their authority.
I always told my parents, "When I was young, I lived where you worked. When you are old, you need to live where I work." Or in the past few years, where my husband works.
And that's just the start. As others have pointed out, do we rob our own retirement funds to care for elderly parents? Then we put this burden on our own kids one day?
I don't know about anyone else's parents, but my parents did not uproot their entire lives to take total care of their own elderly parents. But even with that in mind, and with neither of my parents moving or quitting a job or whatever, the last year that my dad's parents were both alive but very sick nearly did my parents' marriage in. I mean, it had ramifications that were evident till the day my dad died. Their marriage never really recovered from that horrific year.
I really recommend counseling for ANY person or couple faced with long term elder care. Till you've done it, you really have no idea how stressful it can be, even when all parties genuinely love and care for each other.
Thank goodness my dad had provided well for my mom's care (she's the last one left and she has dementia) because when he passed away, we were able to put my mom into a memory care facility, which she desperately needed - and WE needed. Even then, we were both embroiled in settling several estates spanning three states - and closing down my dad's small business too. And don't think for a second that Mom's care has been easy, because it definitely has not. (I just spent most of yesterday on nothing but her needs, for instance - it's just ongoing but I've been able to stay on top of it.) But we got the counseling (six months for about $400 a month - wow). It was very helpful. We lost the weight. This past month, my bloodwork came back PERFECT. My husband's gout is gone, though he kept the high blood pressure (and I kept the gray hair).
But it was only - ONLY - because we had the ability and means to back off, regroup, and focus more on our own lives.
Glad you are feeling better. My hair actually fell out. There was no medical explanation except for stress during that period. It has stopped falling out but it never came back to what it was before. If other family members had been cooperative the stress would have been significantly lessened for me AND for my parents.
The OP is lucky it isn't just her vs. the sabotage sister, and she has support of other siblings.
Glad you are feeling better. My hair actually fell out. There was no medical explanation except for stress during that period. It has stopped falling out but it never came back to what it was before. If other family members had been cooperative the stress would have been significantly lessened for me AND for my parents.
The OP is lucky it isn't just her vs. the sabotage sister, and she has support of other siblings.
Viewing the sister who is not yet onboard with levels of care for mom as "the sabotage sister" is perhaps not the best approach. It is common for some people to be in denial about the deterioration of a parent, and anyone who has cared for a deteriorating parent should know this. Not only is it common for people to be in denial, but it is also common for some to be too eager to move parents into care facilities before it is in the best interests of the parent.
We don't know whether the mom wants to live out her days at home or to move to a care facility. Her wishes should be considered. What we know is that there are four sisters, and only one lives in the same city as mom. That sister does not have time to care for mom because of her husband's medical issues. Does that mean that mom should be placed in a care facility, or is mom okay living on her own with home care assistance for now? Another factor to consider is whether mom has enough finances to hire a live-in caregiver?
Regardless of whether decisions about mom are based on being too eager or being in denial, whether mom can afford a live-in caregiver or whether Home Care can provide the required care, the first step is to have an in-home visit with the Home Care team. That team will provide the paperwork that the doctor needs to sign to transfer decisions about long term care from the elderly parent to the children. To keep the peace between siblings, it's recommended that all children are named as decision makers. The Home Care team will help with making decisions and will be available to facilitate transfer to a care facility when that is best for the elderly parent.
Viewing the sister who is not yet onboard with levels of care for mom as "the sabotage sister" is perhaps not the best approach. It is common for some people to be in denial about the deterioration of a parent, and anyone who has cared for a deteriorating parent should know this. Not only is it common for people to be in denial, but it is also common for some to be too eager to move parents into care facilities before it is in the best interests of the parent.
We don't know whether the mom wants to live out her days at home or to move to a care facility. Her wishes should be considered. What we know is that there are four sisters, and only one lives in the same city as mom. That sister does not have time to care for mom because of her husband's medical issues. Does that mean that mom should be placed in a care facility, or is mom okay living on her own with home care assistance for now? Another factor to consider is whether mom has enough finances to hire a live-in caregiver?
Regardless of whether decisions about mom are based on being too eager or being in denial, whether mom can afford a live-in caregiver or whether Home Care can provide the required care, the first step is to have an in-home visit with the Home Care team. That team will provide the paperwork that the doctor needs to sign to transfer decisions about long term care from the elderly parent to the children. To keep the peace between siblings, it's recommended that all children are named as decision makers. The Home Care team will help with making decisions and will be available to facilitate transfer to a care facility when that is best for the elderly parent.
It is normally not recommended that more than one person have healthcare POA for obvious reasons.
The "denial" sister is interfering, and if the mother is dependent on others for her care it isn't really her decision. Home care assistance still relies on the family. They called us all the time for minor things.
Very few families can afford full time live in caregivers.
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