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Keeping him at the Assisted Living Facility requires that I work a second job to cover what his income can't and when I end up having to manage SO much of his care, the price doesn't seem worth it.
I'm puzzled about Day Care. Isn't that normally part of an AL's activity list? We moved mthr straight to Memory Care, and they have games on Sunday afternoon hosted by one of the hospice companies that has lots of patients (no requirement to be a hospice patient to participate!). I seem to remember other hospice social workers hosting games during the week, but it's been so long since I visited during the week it's fuzzy.
Tiny, I noticed how you dropped that bit about now doing the driving to the Daddy Day Care by yourself just casually into the conversation. Mm'hm.
Strikes me you are paying an awful lot of money to people who aren't doing what you're paying them to do.
And I hate it when veterans aren't paid the respect they're due. Hate it.
Going back a bit, what do you know about the other residents in this facility? I know you said your father won't participate in the activities, but you are kind of enabling that by giving him an alternative (you're also wasting money!). I'm wondering if there are the makings of a peer group for him among some of the other male residents, because in that case it really might be better to drop the day care and nudge your father into developing friendships in his home.
And I agree with what everyone else said too! Hugs to you.
I agree with KatieKay. Make a concerted effort to back away & let the AL do their job.
You are never going to achieve perfection in his care - not with his AL staff nor you. I know it is against our grain to NOT feel that for all the money spent on his care that you should not be getting any service less your money’s worth, and all those details should be taken care of. But in reality it is not realistic.
To get through this bedtime/scooter habit, try to devise a simple checklist for bedtime staff to remind the staff to plug in his scooter. Use flourescent colors to help them notice the cord that needs to be connected and plugged it.
You can’t control everything. Sad to say but sometimes you just have to settle. They (AL staff) appear to be providing his basic care adequately, unless I am wrong.
He is safe there - that is priceless.
Try to focus on the positives in what they provide for him. Otherwise you will be a bundle of nerves (sort of what you are now).
Please do not take him home with you. That is not the answer. Your father lived his life; you need to live yours. It will take its toll on you and your health & that’s not good.
How will he manage breakfast without you? He will survive it. If he is hungry, he will eat. If not, his choice.
As much as I hated (and I mean hated) having to leave my mother in a nursing home where I knew the care was not too individualized, I saw that she was clean, got her three meals and her medications. Walking out of the nursing home after visiting with her often left me in tears. I had to develop my own mantra which was “safety first”. I couldn’t guarantee her safety either, but knew I was doing the best we could. I fortunately had support from my brother who saw her every day.
The only way you can provide less chances of calamity would be to hire a CG to be with your dad whenever you feel he needs it. In your instance I do not feel it is necessary, as your dad does have a bit of his mind functioning and can help himself somewhat with his current AL’s staff assistant. Hiring a CG 1:1 is not realistic not only b/o cost but even that won’t guarantee that nothing adverse will happen.
You (IMO) need to disengage a bit. Go on the cruise. Take 15 minutes a day for yourself to just veg out, meditate, whatever. In your car, at home, anywhere you can. Think about something that a wonder of nature or even a puppy or kitten. (Don’t get one now, of course). You get my drift...
You do so much for your father every day! Your entire life is stuck on his care.
Tinyblu you are doing the best you can. That’s all anyone can do!
Stop trying to micromanage every detail. You can’t fix his COPD, can’t make him move faster, etc. Can’t snap your fingers and make everything perfect.
He has lived his life according to his choices. For him to feel or impose on you any more guilt or play with your psyche to feed his need for dependency directly or indirectly more than you already do is not fair to you at all, and a character flaw of his. He is being selfish to expect his daughter to dedicate her life and well being for him. Parental love does not equal guilt and dependency.
Step off that train.
I would begin decreasing your visits to every other day or every third day, or whatever works with time intervals for your schedule. Let him learn to manage a little more on his own.
Working 2 jobs to boot to provide for his care? Time to live your own and not feel that you are selfish in doing it.
If he needs a SNF in the future, then so be it. You can plan for “just in case “ and that is more than good enough.
Tiny; If your dad has too much in the way of INCOME for Medicaid, you talk to an eldercare lawyer about a Miller Trust. I really, REALLY don't get why you think that paying for your dad's unplanned old age is your job.
I live in a state that has "pockets of wealth" and unfortunatley, I moved to an upwardly moving urban city within that state -- at the time I was in my mid 20's and never thought I would be handcuffed to a cranky 87 year old at 40.
I work (and now live) in a surrounding county where costs are MUCH lower, but the people-pleaser in me worries about uprooting Dad. The smaller county would mean less resources. Dad would lose his free access to the Adult Day Center (though the small center in my county costs about half of the rate where he lives). The ALF's in my county are much smaller and near the road. For some reason that makes me nervous...
And here's the clincher that SO many don't understand. We're African American. In the south. At least in the upwardly urban county where Dad currently lives, he sees another face of color from time to time, but the smaller county lends itself to an unfortunate reality suffered by many people of color.
I get nervous in some areas of the county in which I live... complete with railroad tracks and confederate flags flying EVERYWHERE. I won't even talk about the blank stares my ex BF and I would get when we were out (he was Caucasian) I worry about putting Dad in one of the "nicer" facilities because, sadly, many people of color can't afford the nice places.
Isn't it sad that in order to get a bit more of a cultural mix, Dad would have to go to a Medicaid facility?
...another soap box for another day... Off to find my Afro Pick with the "right on" fist on the end
Tinyblu, I don't know where you live, but basic ALF where I live is less than $5k per month. I'm actually paying a little less than that for Memory Care. And I agree that not all facilities are equal. Dad is in a beautiful state-of-the art facility, and the staff there is mostly very compassionate and does their job, as much as I can tell. And, when we've had issues, they've been addressed and resolved. I will say that I'm there EVERY day, and now that Dad's in hospice, I'm there 2-3 times a day. No judgement -- I realize how blessed I am to be able to do that. You might check into other facilities, just to see if there is something more suitable for your dad. Bless your heart for all that you do.
Thanks everyone. I know Dad and I have a dangerous codependent relationship and "letting go" is so hard for me.
I would LOVE to take a break, but even thinking about it makes me feel guilty.
Wanna hear something REALLY strange? I had a chance to sign up for a girls trip to the Carribean in January but backed out when Dad's VA doctor told me that his kidneys were failing and that I should consider dialysis.
Well, an acquaintance of mine... just a friend of a friend... who is quite well off paid for the trip for me!!! (I'm not going to get into my codependent feelings of IN EXCHANGE FOR WHAT?), so I have this trip looming and I can't enjoy it at all.
This would be the first weekend that I haven't taken Dad to breakfast in three years. What if something happens while I'm gone? I want to back out again because I don't think I'll enjoy the trip because I'll be worried about Dad, but I would also feel horrible that I wasted this guy's money.
...so I'm trying to find a way to pay this guy back and not go. I know some of this pain is self-inflicted, but I don't know what else to do.
...I also looked into NH. That's about $1K a month more. Can't afford that either.
The biggest issue is that with Dad's military benefits from being 100% service connected and receiving a monthly check until death, he is "too rich" for Medicaid facilities. There is no way we can buy down his assets.
Don't even get me on my soapbox about how you either have to be rich to afford getting old and sick or die a destitute pauper. Whatever happened to death with dignity? Oh yeah, you must live in Oregon for that (something I am already planning for old age).
Tinyblu, my gosh you have had your plate full for quite some time now.
Get out the Assisted Living brochure and find out what all is including in the $5k per month rent. One would think there would be daily housekeeping and daily linen service. But not all facilities are created equal. Dad probably is allowed 3 meals per day. Plus daily showering with the help of an Aide. And routine room checks to see if Dad is ok during the day and also at night. The bathroom is probably completely cleaned in the mornings, so if Dad ahem misses the toilet, it probably won't be found until the next morning. Chances are the cleaning staff is only there during the day.
I assume that the Adult Day Care center isn't part of the options at Assisted Living, thus it's your Dad's choice and responsibility to leave the building and go there on schedule. And it's your Dad's choice to shower there and have what sounds like breakfast and lunch.
Doesn't the Assisted Living offer activities for the residents? And if your Dad is able to travel to the Adult Day Care center, the Staff probably believes that your Dad should remember to plug in his own scooter. It could be the Staff isn't allowed to touch such items that are electrical related and owned by the resident. I know you Dad needs the scooter because he has trouble walking.
May I ask why are YOU paying for Assisted Living??? Working 2 jobs??? That's going to ruin your health big time. Take a deep breath and let the Assisted Living do their job. Stay out of their way unless it is something extremely urgent health wise for your Dad.
In my humble opinion, you are WAY too invested in how happy your extremely narcissistic dad is. I know that you love your dad; I'm happy for him that you are so devoted.
But narcissists are like empty wells, Tiny. Trying to fix things is going to kill you. I'm not exaggerating.
I want you to consider taking a two week breather from hand's on Dad care. Unless the AL calls and he's bleeding from an orifice, you are off duty.
I'm sorry you are going through so much as well Tiny. I agree with golden.. what would happen if you just let things be for a week or 2 and rest. Sometimes you just can't fix everything. Maybe the ALF would see you aren't always there and step up some and be more accommodating. Would your dad still at least be safe there? I'm sure he will complain and be unhappy .. but would he at least be safe and have his basic needs met?
I know backing away is much easier said then done...you are reaching a breaking point though...
(((((((hugs))))) tiny Seems it is all coming to a head for you. Sometimes we have to pull the plug. Can you back off and let go of trying to keep him happy and managing the ALF staff. Your basic obligation is to keep him safe, and fed with a roof over his head. He has that. Anything more is gravy. Don't take all the calls - give yourself a break. You desperately need one far more than anything he needs.
I agree that he may be coming to the time that he needs more care as in memory care or an NH.
Perhaps your dad is ready for a nursing facility and is too sick for AL. Of course I don’t know what the AL problem is but you definitely need to consider moving your dad elsewhere.
As I once again had to do the things that the UN Assisted Living Facility did NOT despite my many requests, I once again asked myself WTH am I paying for?
The weight of caregiving is becoming heavier for me. I'm in an interesting situation. While we have some resources to place Dad in an ALF, keeping him there requires that I work a second job to cover what his income can't and when I end up having to manage SO much, the price doesn't seem worth it.
It would seem that for $5K a month, I could get the staff to do a better job cleaning after Dad or plugging in his scooter at night or consistently bringing him meals. Instead, I'm left to manage what they aren't doing which takes valuable time and energy. Then I get eyes rolled at me for asking the staff for help, and Dad gets his head bitten off.
If they're going to be short with him, I might as well, much to my dismay, move him with me and at least save money.
I've researched and weighed my options, and there's no way to find a happy medium, everyone is going to be miserable. I looked into a smaller family care home, and that costs more than the AL. I can't afford that.
Dad doesn't use most of the services covered in the $5K. He gets bathed at the Adult Day Center (the AL staff won't even help Dad wait for his transportation to the center), and since he's not at the ALF three days a week, he doesn't eat lunch there. He may eat dinner there, but that's it. The only thing the ALF does for me is keep him safe at night and deal with his insomnia. They also manage his meds, but they let his bathroom smell like a urinal. They don't clean up whatever he spills on the floor (coffee or Coca Cola is almost always on the floor), and despite my begging, they can't manage to plug his scooter in every night despite being in his room to give him his evening meds. It's maddening.
I'm thinking that I can do these things for a helluva lot less than the cost of AL, but at what cost? Peace of mind? Nightly sleep? Having to move back to the "city" and commuting over an hour through horrific traffic so Dad can continue attending the Adult Day Center (driving him myself since their transportation SUCKS!!!). Ignoring my need for my own space (sometimes I don't want to be around people at all after work. I come home and watch the paint dry). Having to deal with a TV being on ALL DAY LONG or the temperature being completely miserable (or financing this ridiculous light bill). Having to deal with Dad's insomnia. He doesn't sleep at night and I have to be awake and alert for my TWO JOBS!!!!
Ugh!!! I would be miserable, and I think Dad would too. He doesn't participate in ANY of the activities at the AL, but would have no problem wanting me to be his social calendar.
I feel forced into making this decision. Keeping Dad happy would mean becoming more miserable than I already am. I seriously dread going to visit him now and find myself wondering if he's going to be stubborn enough to hold on for years to come.
That would be awful. I had just started to try to gain some of my life back and it seems like I can't escape a responsibility I never asked for. If some of Dad's ailments were just old age, I would see that, but he CHOSE to smoke and suffer this COPD. Three of Dad's smoking buddies had heart attacks and died instantly. This is so mean to say, but GOD THEIR KIDS ARE LUCKY!!!
They call Dad the "miracle man" for continuing to exist in spite of his many ailments. I'm sick of the miracle... and they don't have to deal with the constant stress that goes along with care giving. No, I'm not with him 24/7 but might as well be.
I pay people to manage this stuff and nothing is managed. I'm beyond frustrated and ready for this to end. Sometimes I just want to end it all. If he doesn't go soon, I'm seriously thinking of leaving here myself.
...and I know I need help. I don't have the time or money to get that either. Thanks Miracle Man...
Hi Tinyblu I hope you have the chance to post more specifics. There are a lot of people here who have had experience with this issue. In the meantime, eldercare.acl.gov/Public/Index is a website that has connections to programs in every state.
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APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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Strikes me you are paying an awful lot of money to people who aren't doing what you're paying them to do.
And I hate it when veterans aren't paid the respect they're due. Hate it.
Going back a bit, what do you know about the other residents in this facility? I know you said your father won't participate in the activities, but you are kind of enabling that by giving him an alternative (you're also wasting money!). I'm wondering if there are the makings of a peer group for him among some of the other male residents, because in that case it really might be better to drop the day care and nudge your father into developing friendships in his home.
And I agree with what everyone else said too! Hugs to you.
You are never going to achieve perfection in his care - not with his AL staff nor you. I know it is against our grain to NOT feel that for all the money spent on his care that you should not be getting any service less your money’s worth, and all those details should be taken care of.
But in reality it is not realistic.
To get through this bedtime/scooter habit, try to devise a simple checklist for bedtime staff to remind the staff to plug in his scooter. Use flourescent colors to help them notice the cord that needs to be connected and plugged it.
You can’t control everything. Sad to say but sometimes you just have to settle. They (AL staff) appear to be providing his basic care adequately, unless I am wrong.
He is safe there - that is priceless.
Try to focus on the positives in what they provide for him. Otherwise you will be a bundle of nerves (sort of what you are now).
Please do not take him home with you. That is not the answer. Your father lived his life; you need to live yours. It will take its toll on you and your health & that’s not good.
How will he manage breakfast without you? He will survive it. If he is hungry, he will eat. If not, his choice.
As much as I hated (and I mean hated) having to leave my mother in a nursing home where I knew the care was not too individualized, I saw that she was clean, got her three meals and her medications. Walking out of the nursing home after visiting with her often left me in tears. I had to develop my own mantra which was “safety first”. I couldn’t guarantee her safety either, but knew I was doing the best we could. I fortunately had support from my brother who saw her every day.
The only way you can provide less chances of calamity would be to hire a CG to be with your dad whenever you feel he needs it. In your instance I do not feel it is necessary, as your dad does have a bit of his mind functioning and can help himself somewhat with his current AL’s staff assistant. Hiring a CG 1:1 is not realistic not only b/o cost but even that won’t guarantee that nothing adverse will happen.
You (IMO) need to disengage a bit. Go on the cruise. Take 15 minutes a day for yourself to just veg out, meditate, whatever. In your car, at home, anywhere you can. Think about something that a wonder of nature or even a puppy or kitten. (Don’t get one now, of course). You get my drift...
You do so much for your father every day! Your entire life is stuck on his care.
Tinyblu you are doing the best you can. That’s all anyone can do!
Stop trying to micromanage every detail. You can’t fix his COPD, can’t make him move faster, etc. Can’t snap your fingers and make everything perfect.
He has lived his life according to his choices. For him to feel or impose on you any more guilt or play with your psyche to feed his need for dependency directly or indirectly more than you already do is not fair to you at all, and a character flaw of his. He is being selfish to expect his daughter to dedicate her life and well being for him. Parental love does not equal guilt and dependency.
Step off that train.
I would begin decreasing your visits to every other day or every third day, or whatever works with time intervals for your schedule. Let him learn to manage a little more on his own.
Working 2 jobs to boot to provide for his care? Time to live your own and not feel that you are selfish in doing it.
If he needs a SNF in the future, then so be it. You can plan for “just in case “ and that is more than good enough.
You can change this. We are rooting for you!
I live in a state that has "pockets of wealth" and unfortunatley, I moved to an upwardly moving urban city within that state -- at the time I was in my mid 20's and never thought I would be handcuffed to a cranky 87 year old at 40.
I work (and now live) in a surrounding county where costs are MUCH lower, but the people-pleaser in me worries about uprooting Dad. The smaller county would mean less resources. Dad would lose his free access to the Adult Day Center (though the small center in my county costs about half of the rate where he lives). The ALF's in my county are much smaller and near the road. For some reason that makes me nervous...
And here's the clincher that SO many don't understand. We're African American. In the south. At least in the upwardly urban county where Dad currently lives, he sees another face of color from time to time, but the smaller county lends itself to an unfortunate reality suffered by many people of color.
I get nervous in some areas of the county in which I live... complete with railroad tracks and confederate flags flying EVERYWHERE. I won't even talk about the blank stares my ex BF and I would get when we were out (he was Caucasian) I worry about putting Dad in one of the "nicer" facilities because, sadly, many people of color can't afford the nice places.
Isn't it sad that in order to get a bit more of a cultural mix, Dad would have to go to a Medicaid facility?
...another soap box for another day... Off to find my Afro Pick with the "right on" fist on the end
I would LOVE to take a break, but even thinking about it makes me feel guilty.
Wanna hear something REALLY strange? I had a chance to sign up for a girls trip to the Carribean in January but backed out when Dad's VA doctor told me that his kidneys were failing and that I should consider dialysis.
Well, an acquaintance of mine... just a friend of a friend... who is quite well off paid for the trip for me!!! (I'm not going to get into my codependent feelings of IN EXCHANGE FOR WHAT?), so I have this trip looming and I can't enjoy it at all.
This would be the first weekend that I haven't taken Dad to breakfast in three years. What if something happens while I'm gone? I want to back out again because I don't think I'll enjoy the trip because I'll be worried about Dad, but I would also feel horrible that I wasted this guy's money.
...so I'm trying to find a way to pay this guy back and not go. I know some of this pain is self-inflicted, but I don't know what else to do.
...I also looked into NH. That's about $1K a month more. Can't afford that either.
The biggest issue is that with Dad's military benefits from being 100% service connected and receiving a monthly check until death, he is "too rich" for Medicaid facilities. There is no way we can buy down his assets.
Don't even get me on my soapbox about how you either have to be rich to afford getting old and sick or die a destitute pauper. Whatever happened to death with dignity? Oh yeah, you must live in Oregon for that (something I am already planning for old age).
Get out the Assisted Living brochure and find out what all is including in the $5k per month rent. One would think there would be daily housekeeping and daily linen service. But not all facilities are created equal. Dad probably is allowed 3 meals per day. Plus daily showering with the help of an Aide. And routine room checks to see if Dad is ok during the day and also at night. The bathroom is probably completely cleaned in the mornings, so if Dad ahem misses the toilet, it probably won't be found until the next morning. Chances are the cleaning staff is only there during the day.
I assume that the Adult Day Care center isn't part of the options at Assisted Living, thus it's your Dad's choice and responsibility to leave the building and go there on schedule. And it's your Dad's choice to shower there and have what sounds like breakfast and lunch.
Doesn't the Assisted Living offer activities for the residents? And if your Dad is able to travel to the Adult Day Care center, the Staff probably believes that your Dad should remember to plug in his own scooter. It could be the Staff isn't allowed to touch such items that are electrical related and owned by the resident. I know you Dad needs the scooter because he has trouble walking.
May I ask why are YOU paying for Assisted Living??? Working 2 jobs??? That's going to ruin your health big time. Take a deep breath and let the Assisted Living do their job. Stay out of their way unless it is something extremely urgent health wise for your Dad.
In my humble opinion, you are WAY too invested in how happy your extremely narcissistic dad is. I know that you love your dad; I'm happy for him that you are so devoted.
But narcissists are like empty wells, Tiny. Trying to fix things is going to kill you. I'm not exaggerating.
I want you to consider taking a two week breather from hand's on Dad care. Unless the AL calls and he's bleeding from an orifice, you are off duty.
Give it a shot.
I know backing away is much easier said then done...you are reaching a breaking point though...
(((hugs)))
I agree that he may be coming to the time that he needs more care as in memory care or an NH.
Big (((((((((((hugs)))))))))))
The weight of caregiving is becoming heavier for me. I'm in an interesting situation. While we have some resources to place Dad in an ALF, keeping him there requires that I work a second job to cover what his income can't and when I end up having to manage SO much, the price doesn't seem worth it.
It would seem that for $5K a month, I could get the staff to do a better job cleaning after Dad or plugging in his scooter at night or consistently bringing him meals. Instead, I'm left to manage what they aren't doing which takes valuable time and energy. Then I get eyes rolled at me for asking the staff for help, and Dad gets his head bitten off.
If they're going to be short with him, I might as well, much to my dismay, move him with me and at least save money.
I've researched and weighed my options, and there's no way to find a happy medium, everyone is going to be miserable. I looked into a smaller family care home, and that costs more than the AL. I can't afford that.
Dad doesn't use most of the services covered in the $5K. He gets bathed at the Adult Day Center (the AL staff won't even help Dad wait for his transportation to the center), and since he's not at the ALF three days a week, he doesn't eat lunch there. He may eat dinner there, but that's it. The only thing the ALF does for me is keep him safe at night and deal with his insomnia. They also manage his meds, but they let his bathroom smell like a urinal. They don't clean up whatever he spills on the floor (coffee or Coca Cola is almost always on the floor), and despite my begging, they can't manage to plug his scooter in every night despite being in his room to give him his evening meds. It's maddening.
I'm thinking that I can do these things for a helluva lot less than the cost of AL, but at what cost? Peace of mind? Nightly sleep? Having to move back to the "city" and commuting over an hour through horrific traffic so Dad can continue attending the Adult Day Center (driving him myself since their transportation SUCKS!!!). Ignoring my need for my own space (sometimes I don't want to be around people at all after work. I come home and watch the paint dry). Having to deal with a TV being on ALL DAY LONG or the temperature being completely miserable (or financing this ridiculous light bill). Having to deal with Dad's insomnia. He doesn't sleep at night and I have to be awake and alert for my TWO JOBS!!!!
Ugh!!! I would be miserable, and I think Dad would too. He doesn't participate in ANY of the activities at the AL, but would have no problem wanting me to be his social calendar.
I feel forced into making this decision. Keeping Dad happy would mean becoming more miserable than I already am. I seriously dread going to visit him now and find myself wondering if he's going to be stubborn enough to hold on for years to come.
That would be awful. I had just started to try to gain some of my life back and it seems like I can't escape a responsibility I never asked for. If some of Dad's ailments were just old age, I would see that, but he CHOSE to smoke and suffer this COPD. Three of Dad's smoking buddies had heart attacks and died instantly. This is so mean to say, but GOD THEIR KIDS ARE LUCKY!!!
They call Dad the "miracle man" for continuing to exist in spite of his many ailments. I'm sick of the miracle... and they don't have to deal with the constant stress that goes along with care giving. No, I'm not with him 24/7 but might as well be.
I pay people to manage this stuff and nothing is managed. I'm beyond frustrated and ready for this to end. Sometimes I just want to end it all. If he doesn't go soon, I'm seriously thinking of leaving here myself.
...and I know I need help. I don't have the time or money to get that either. Thanks Miracle Man...
Sorry...I'm REALLY having a bad day....
I hope you have the chance to post more specifics. There are a lot of people here who have had experience with this issue. In the meantime, eldercare.acl.gov/Public/Index is a website that has connections to programs in every state.
Best of luck
Margaret