The Guilt Trap. It's right there in the middle of the floor. We've all stepped in it. Sometimes we get to step out. Others get trapped there permanently because they don't know what to do about it.
It's really important to understand that caregiving is not guilt-free, even when you do everything perfectly. Absence of guilt is not sign of success. Feelings of guilt are not a sign of failure. It's a trap. Be ready for it.
Don't be misled to think the feelings of a caregiver are as simple as feeling guilty or good. It's not black & white like that. It's very, very complicated. We misname this complex hairball of simultaneous and conflicting feelings guilt, out of a lack of better names or understanding.
Guilt is fine if you did something illegal or morally wrong. Guilt is not appropriate when you are simply doing the best you can under the circumstances. There are no caregiver bonus points to the one dying with the most guilt.
We are all human beings, not super machines that suddenly have training and knowledge to take care of a frail old person. We don't live in The Matrix, where you can sit connected to a computer and have new ability downloaded into your head. But we act like that is the case for family & friends who take on caregiving.
Overnight, we are supposed to be an RN, personal attendant, nutritionist, activity director, psychiatric nurse, janitor, cook, and driver. Financial manager, estate & probate expert, real estate savvy, and familiar with the ins & outs of Medical Assistance and the VA. If you can't do any of that, or aren't very good at it, then you're supposed to feel guilty. Seriously?
I reject that nonsense. I didn't make my mother old, nor did I give her mental illness, or dementia. I'm doing the best I can, and if anybody out there wants to criticize me, without stepping in to help or pay, kindly stuff it.
What I do feel is a lot of fear. Fear of the unknown. Fear of failing. I'm going to screw up by paying the wrong thing in the wrong order, and just make a mess out of it.
Resentment. The opportunity cost for this experience for me and my family has been very, very high. I only get one life to live too, and when my mother was this age, she was not doing parental caregiving at all. Both her parents had relatively fast declines & deaths. It did not go on for decades, as dementia care tends to. She did not have her hands full with a diabetic, kidney & liver impaired psychiatric patient who also developed dementia.
Frustration. Everything is so confoundedly hard because mom would not plan ahead. She had almost nothing in place to allow me to do her caregiving in the first place. Her home, her finances, her stuff, her health, her everything have all been one giant hot mess after the next. So much money has been spent on doing things so I can take care of her, that could have gone directly to care. E.g. attorney & court fees.
Disappointment. The current state of things and the fact there is no recovery means the end of any opportunity for do-overs. We are not going to see those Christmas lights, eat at that restaurant, or shop that store. I am never going to hear "I'm sorry" for the years of bad stuff. There will not be happy family memories around the dinner table, close moments with grand kids. That ship has sailed and is not coming back. We were robbed before we even began.
So, to anybody who wants to heap guilt or blame, tsk their tongue at me, shake their head, or whisper about me, go ahead. That doesn't mean I will accept it, let it affect me, or change anything about what I'm having to do to follow the laws & rules, make sure mom is safe, clean, fed, & properly medicated. And if you can do better, by all means, let me know ASAP so I can get the guardianship & POA documents changed!
It's a hard task, but what happens if your dad dies early and your mother still lives many decades more? And she lives in another state than you and your family and your sibling and his family? Very hard! This is what happened to me with Mother refusing to leave her house.
He'd been in the hospital since late July, and at first was going to be moved to a wonderful private VA Medical Foster Home for necessary 24/7 care. This was his physician's strong recommendation because we could not offer the comprehensive supervision that he desperately needed while living in our home. Dad's bank account could not accommodate home health aides and nurses, as he gave his entire life savings and material assets to his son.
Both employed full-time, neither my husband nor I could afford any "leave of absence" luxuries. We're saving for our OWN retirement, paying a mortgage, etc., and financing our own health care. We're also contributing to SS (hoping it's still available in 3 decades).
We don't have children, but even if we did, we would by all means take responsibility for our sunset years, and if need be, live in a care facility ourselves.
I never made such a promise to my Dad, because I knew it was downright unrealistic and completely out of our financial scope. He and his sisters had placed their own mother in a care center after having tried to look after her in their own homes for many years.
Dad never made it to the medical foster home, as he declined in the hospital and went right into Hospice toward late August. The entire ordeal was heart-wrenching, and there were very few choices available to us. Thank God for the VA because without it, Dad would have been in a Medicaid nursing home and hospice.
I will mourn Dad's loss the rest of my life. But I will entertain not one IOTA of guilt because I did everything I could for him, in good faith, with a devoted daughter's love.
For anyone to imply that outsourcing a parent's care is callous is in ITSELF quite callous. My hat's off to those who are able to make this happen, but the rest of us are not quite as fortunate in logistical or financial means.
Agreed, I'm probably not cut out to be a caregiver either. I have just watched as my cousins have had bitter regrets about the nursing home experiences that their parents had. I'm no angel nor do I hold any special talents. I'm approaching 70 so I'm no young chicken either. Fortunately I have a big house and use it to leverage part of my mother's care. I planned it that way since I was 30 years old. I'm lucky that Mother and I were close and that she put money into the house to make a future home for herself. Unfortunately I will probably be put in a home if I become incapacitated. My kids are completely self absorbed I am an only child with older cousins and no close relatives. My husband is older than I am and his only son lives across the country. I'm saving up bullets. lol...
Of course you are burned out! I don't know how you are hanging on. Hospice can't provide all of the help that you need (as you've seen) but at least it's something. It's sad that your siblings can't help more. This is the end for your mom. We can't help physically, but please keep in touch so we know how you're doing. Sometimes just connecting with others can help a little. Carol
I promised both my parents this. My dad had pancreatic cancer and we kept him home till his last breath. We had more help then. Of course my mom was able to help also. Well, my mom is the one who is sick now and I have moved in with her over 1 yr ago and recently quit my job to become her full time caregiver. The only people I have to help me are my brother which I have 2 and my daughter when she can. I have a son, but he works 7 days a week. I have a niece and nephew, but as my nephew said in a nasty text to me, " She is your mom ( his grandma) and you chose to take care of her, so she is your responsibility no-one elses, and we have lives, and we are busy!". This is the son of the brother who has nothing to do with my mom, which started before she got sick. For no good reason. This is a 24/7 job, and very stressful. My mom recently contracted C-diff from one of the hospice nurses. What a nightmare. This morning she was throwing up. My niece also the daughter of my brother with no contact, is an RN, 3 days on and 4 off, but no offer to come and help. Starting this Thurs, thru hospice, I will get a volunteer to come out for 4 hrs to re-leave me but they do not change diapers, ( my mom is incontinent both ways). That sometimes is what I need a break from. She also does not walk. I get her from the bed to her lift chair in the morning, and she stays there till night and then my other brother comes over and helps me get her back in bed for the night. My brother Tom, helps with alot of other things. He does cook us meals, goes to the store, will come over and stay if I need to go somewhere. Will not change diapers, Very draining, emotionally, physically, mentally sometimes I just go in my room and cry. Thanks for listening.
sherry1anne, please note that not everyone is cut out to be a caregiver and some of us are seniors ourselves with our own age decline issues. Twenty years ago I probably would do it, but not now. I mean, who is going to pick me up when I fall? I know my parents can't. And you mentioned "us", well not all households have "us" to help out, we are on our own.
I rather my parents be cared for by professionals who have been on this rodeo many times over and know quickly what to do. For me, I would be digging around my bookshelf looking for the right book, then searching for the right chapter to find out what to do. By then the damage is done.
When I'm old, I hope I eat a nice supper with sausages and beer, and pass away in my sleep. But we don't get to choose, do we? For some it's a long, long, long road down.
On the off chance I'm a demented, raving, out of control, psychotic wild woman, as is my mother, I will say now that I do not want to put that burden on my children. Put me where I will be safe from myself, the world, and they can go earn their wages, raise children, and enjoy life. I had my turn. I wouldn't wish what I and others here have to go through on my worst enemy.
Good for you if you can manage at home, but don't go putting others down who need help. It sounds very callous and sanctimonious. We are put in different situations. Blame is not helpful.
I think a promise is a promise. When I'm old, I prefer to die than to be put into a nursing home. My mother at 104 is still home, in my home where she will remain until one of us dies. Nursing homes are just a convenience for families who don't want to take responsibility. I've seen it from all sides. Unless Mother is unconscious, she will continue to be served her meals at the table and be given showers daily by one of our household. Yes, it costs me in time, sanity and money, but I don't want a nursing home for myself so how can I inflict this on my mother.
With all your good efforts, you can not offer your parents the level of care they would receive in a senior home. The key is to find a senior home that is affordable and has a one-on-one (medical professional to senior) care.
sheatuck, this a horrible situation for you and your husband, and you're both far too young for this. But it's reality. It is time for your husband to have professional care.
It will be better for both of you if the hard physical work of his care is handled by professionals who can rest when off duty. That frees you to be his wife again, giving him your companionship and loving care from a perspective of a rested body and mind.
No guilt allowed here, okay? You are doing your best and will continue to do so. In this case, your best will be finding a good care home for him.
freqflyer's advice was excellent. Read more articles on what to look for in senior living. Also, go to www.aging.gov and find your state's services. When you click on your state's name you see a long list of options. Some of them may be helpful to you.
Take care of your husband by taking better care of yourself, my friend. Please update us when you can. Carol
sheatuck, go to the blue bar at the top of this page which says SENIOR LIVING, click on the title, a drop down menu will appear. You will find excellent articles on various living situations. Hopefully you will find a place that will be best for your husband or bringing in caregivers to your home.
My husband is only 64 years old, but he is unable to control his bladder or bowels. He cannot walk, due to a seriously out of control bacterial and staff infection in his legs, in desperate need of two knee replacements. I am just unable to continue caring for him. What are suggestions on a rehab center or maybe a nursing home to assist in his full time care?
Yes, it's so easy to make the promise when people are healthy or else at a time when we are vulnerable and we don't know all the facts. Thanks for posting this information! You helped a lot of people! Carol
I posted about a month ago on how helpful I thought my appointment with an elder care attorney went. She was telling me about how she served as POA for several clients who had no family to serve in that capacity. She quoted that the average cost of bringing in around the clock skilled nursing in our area as $19,000 per month! wow Good information to know before promises are made.
Thank you, Carol. I'm only in the exploratory phase at this point, and hope that it can eventually work out. There's no way Dad can afford the aide support that remaining in our home would eventually require. Taking deep breaths and trusting my gut, as I've been throughout this journey.
I'm so glad that you have a supportive husband, good friends and a therapist. You have done and are doing all that you can. This time comes for many of us. You aren't failing your dad in any way. Please keep in touch when you can. We'd like to support you, too. Carol
I am experiencing this emotional conflict right now. Dad's VA PCP has recommended a Medical Foster Home, strictly overseen by the VA and in a private house, with a max of only 2 other Veterans.
Because I had him enrolled in the VA Home-Based Primary Care program several months ago after he lost his car to an accident, he's eligible and meets all medical criteria.
Dad's been diagnosed with both metastatic prostate cancer and Alzheimer's, and his mobility has decreased. He now wears a urine catheter bag because of the enlarged prostate.
He's had good days, but others have been very rough—and I can see the handwriting on the wall because these are progressively debilitating diseases. Even on days when he "doesn't have to" use his cane, he's a fall risk, and my home is loaded with stairs. Having an aide on weekday afternoons helps a great deal (that was a tough sell but he's doing better with it).
If he does have a good day, such as yesterday, that's a positive—however, the bad ones are coming and I need to plan ahead for that. It's a no-brainer for me to consider this affordable alternative to typical nursing and assisted living facilities.
The 24/7 mentality and logistics of looking after Dad has definitely affected our home life, and I must safeguard that. Having a supportive husband means the world.
And as a caregiver who has up until now refused to entertain an iota of guilt, it's becoming harder to resist because of societal expectations. My therapist and good friends and family have kept my mind afloat amid the treacherous waves of challenge.
AkaHeart, I'm so glad that you wrote. Feel free to "vent" any time.
You've given so much of your life over to caregiving. It's time to turn over the major care to someone else. Like most of us, you jumped into it with love but didn't have any idea of long it would last or how demanding it would become. Please remember that your mom - even if she can't express this now - would never have wanted you to sacrifice everything for her.
Your health may be affected severely if you don't start to consider yourself in your own life.
Today was the WORST DAY with my Mother who will turn 99 next month! We put on an extension on our house to take care of her 14 years ago after my only sibling sister passed on....so there is only me left. I agreed to it at the time but when she turned 94, dementia starting taking over and it has progressively gotten worse! I gave up my Italian restaurant July, 2014 to take care of her full-time as it was getting hard on my husband to deal with her erradicate behavior and she was constantly calling my restaurant screaming about "people" in her house annoying her who lived up in the "fans" of her home. She had "imaginary" people coming and going; along with animals making a mess in her home (we have no animals). These are her imaginary animals! She has severe osteoporosis and cannot walk very well, macular degeneration and is constantly falling down because she refuses to use her walker and only wants her cane. I spoke with her tonight lovingly saying that I'm finding it hard to take care of her and she starts to cry and begs me to please not put her in a home. Anyway, I always promised to take care of her and said I would never put her in a nursing home, but these past few months have drained me physically and emotionally. I don't talk with many people because I don't want to complain, but my husband keeps telling me "It's time to put her in a facility". My husband has put up with a lot of emotional turmoils in our own home because my mother talks vicious to me at times and can get very nasty, which causes problems because my husband stands up for me but I keep telling him not to get mad because it only makes matters worse. I don't go anywhere or see anyone because she gives me an attitude and doesn't want anyone but me. My husband and I are both retired and I don't know the last time we spent time out together. I love him so much and don't want to lose him because my mother is, and has always been a very demanding person and feels that she should come first before my husband. I am getting very depressed and it's now affecting my health as I get chest pains and have gained weight due to all of this. I just can't deal with this emotional roller coaster because now I am getting frustrated and sorry I gave up my life to take care of her and I didn't want to feel like this towards her. Just have to vent here and maybe someone can give me some suggestions. Thank you for reading this!
Thank you for your kind comments. When I write, I write from the heart of a caregiver but as a writer I do try to consider all angles. This is one tough subject so I'm particularly happy that my words have helped some people though this exceptionally difficult time. Guilt is our number one enemy in such instances. Take care, my friends, Carol
I'm so glad the article helped. We are here to support each other and much of that support comes from walking similar journeys. Blessings, my friend. Please keep us updated as you move forward - maybe our support can give you comfort. Carol
Excellent article! I too made such a promise and now realize I can't do it all alone. Mom is not ready just yet, but the time will be here before I know it and this article has been a God send to me, by lifting the guilt I've been feeling lately. I also appreciate the info of getting one lined up now instead of at the spur of the moment. Thank you🐾
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“I Promised My Parents I'd Never Put Them in a Nursing Home”
It's right there in the middle of the floor. We've all stepped in it. Sometimes we get to step out. Others get trapped there permanently because they don't know what to do about it.
It's really important to understand that caregiving is not guilt-free, even when you do everything perfectly. Absence of guilt is not sign of success. Feelings of guilt are not a sign of failure. It's a trap. Be ready for it.
Don't be misled to think the feelings of a caregiver are as simple as feeling guilty or good. It's not black & white like that. It's very, very complicated.
We misname this complex hairball of simultaneous and conflicting feelings guilt, out of a lack of better names or understanding.
Guilt is fine if you did something illegal or morally wrong. Guilt is not appropriate when you are simply doing the best you can under the circumstances. There are no caregiver bonus points to the one dying with the most guilt.
We are all human beings, not super machines that suddenly have training and knowledge to take care of a frail old person. We don't live in The Matrix, where you can sit connected to a computer and have new ability downloaded into your head. But we act like that is the case for family & friends who take on caregiving.
Overnight, we are supposed to be an RN, personal attendant, nutritionist, activity director, psychiatric nurse, janitor, cook, and driver. Financial manager, estate & probate expert, real estate savvy, and familiar with the ins & outs of Medical Assistance and the VA. If you can't do any of that, or aren't very good at it, then you're supposed to feel guilty. Seriously?
I reject that nonsense. I didn't make my mother old, nor did I give her mental illness, or dementia. I'm doing the best I can, and if anybody out there wants to criticize me, without stepping in to help or pay, kindly stuff it.
What I do feel is a lot of fear. Fear of the unknown. Fear of failing. I'm going to screw up by paying the wrong thing in the wrong order, and just make a mess out of it.
Resentment. The opportunity cost for this experience for me and my family has been very, very high. I only get one life to live too, and when my mother was this age, she was not doing parental caregiving at all. Both her parents had relatively fast declines & deaths. It did not go on for decades, as dementia care tends to. She did not have her hands full with a diabetic, kidney & liver impaired psychiatric patient who also developed dementia.
Frustration. Everything is so confoundedly hard because mom would not plan ahead. She had almost nothing in place to allow me to do her caregiving in the first place. Her home, her finances, her stuff, her health, her everything have all been one giant hot mess after the next. So much money has been spent on doing things so I can take care of her, that could have gone directly to care. E.g. attorney & court fees.
Disappointment. The current state of things and the fact there is no recovery means the end of any opportunity for do-overs. We are not going to see those Christmas lights, eat at that restaurant, or shop that store. I am never going to hear "I'm sorry" for the years of bad stuff. There will not be happy family memories around the dinner table, close moments with grand kids. That ship has sailed and is not coming back. We were robbed before we even began.
So, to anybody who wants to heap guilt or blame, tsk their tongue at me, shake their head, or whisper about me, go ahead. That doesn't mean I will accept it, let it affect me, or change anything about what I'm having to do to follow the laws & rules, make sure mom is safe, clean, fed, & properly medicated. And if you can do better, by all means, let me know ASAP so I can get the guardianship & POA documents changed!
He'd been in the hospital since late July, and at first was going to be moved to a wonderful private VA Medical Foster Home for necessary 24/7 care. This was his physician's strong recommendation because we could not offer the comprehensive supervision that he desperately needed while living in our home. Dad's bank account could not accommodate home health aides and nurses, as he gave his entire life savings and material assets to his son.
Both employed full-time, neither my husband nor I could afford any "leave of absence" luxuries. We're saving for our OWN retirement, paying a mortgage, etc., and financing our own health care. We're also contributing to SS (hoping it's still available in 3 decades).
We don't have children, but even if we did, we would by all means take responsibility for our sunset years, and if need be, live in a care facility ourselves.
I never made such a promise to my Dad, because I knew it was downright unrealistic and completely out of our financial scope. He and his sisters had placed their own mother in a care center after having tried to look after her in their own homes for many years.
Dad never made it to the medical foster home, as he declined in the hospital and went right into Hospice toward late August. The entire ordeal was heart-wrenching, and there were very few choices available to us. Thank God for the VA because without it, Dad would have been in a Medicaid nursing home and hospice.
I will mourn Dad's loss the rest of my life. But I will entertain not one IOTA of guilt because I did everything I could for him, in good faith, with a devoted daughter's love.
For anyone to imply that outsourcing a parent's care is callous is in ITSELF quite callous. My hat's off to those who are able to make this happen, but the rest of us are not quite as fortunate in logistical or financial means.
Carol
This is a 24/7 job, and very stressful. My mom recently contracted C-diff from one of the hospice nurses. What a nightmare. This morning she was throwing up. My niece also the daughter of my brother with no contact, is an RN, 3 days on and 4 off, but no offer to come and help.
Starting this Thurs, thru hospice, I will get a volunteer to come out for 4 hrs to re-leave me but they do not change diapers, ( my mom is incontinent both ways). That sometimes is what I need a break from. She also does not walk. I get her from the bed to her lift chair in the morning, and she stays there till night and then my other brother comes over and helps me get her back in bed for the night. My brother Tom, helps with alot of other things. He does cook us meals, goes to the store, will come over and stay if I need to go somewhere. Will not change diapers,
Very draining, emotionally, physically, mentally sometimes I just go in my room and cry.
Thanks for listening.
Burned Out!
I rather my parents be cared for by professionals who have been on this rodeo many times over and know quickly what to do. For me, I would be digging around my bookshelf looking for the right book, then searching for the right chapter to find out what to do. By then the damage is done.
On the off chance I'm a demented, raving, out of control, psychotic wild woman, as is my mother, I will say now that I do not want to put that burden on my children. Put me where I will be safe from myself, the world, and they can go earn their wages, raise children, and enjoy life. I had my turn. I wouldn't wish what I and others here have to go through on my worst enemy.
Good for you if you can manage at home, but don't go putting others down who need help. It sounds very callous and sanctimonious. We are put in different situations. Blame is not helpful.
It will be better for both of you if the hard physical work of his care is handled by professionals who can rest when off duty. That frees you to be his wife again, giving him your companionship and loving care from a perspective of a rested body and mind.
No guilt allowed here, okay? You are doing your best and will continue to do so. In this case, your best will be finding a good care home for him.
freqflyer's advice was excellent. Read more articles on what to look for in senior living. Also, go to www.aging.gov and find your state's services. When you click on your state's name you see a long list of options. Some of them may be helpful to you.
Take care of your husband by taking better care of yourself, my friend. Please update us when you can.
Carol
Carol
Carol
Because I had him enrolled in the VA Home-Based Primary Care program several months ago after he lost his car to an accident, he's eligible and meets all medical criteria.
Dad's been diagnosed with both metastatic prostate cancer and Alzheimer's, and his mobility has decreased. He now wears a urine catheter bag because of the enlarged prostate.
He's had good days, but others have been very rough—and I can see the handwriting on the wall because these are progressively debilitating diseases. Even on days when he "doesn't have to" use his cane, he's a fall risk, and my home is loaded with stairs. Having an aide on weekday afternoons helps a great deal (that was a tough sell but he's doing better with it).
If he does have a good day, such as yesterday, that's a positive—however, the bad ones are coming and I need to plan ahead for that. It's a no-brainer for me to consider this affordable alternative to typical nursing and assisted living facilities.
The 24/7 mentality and logistics of looking after Dad has definitely affected our home life, and I must safeguard that. Having a supportive husband means the world.
And as a caregiver who has up until now refused to entertain an iota of guilt, it's becoming harder to resist because of societal expectations. My therapist and good friends and family have kept my mind afloat amid the treacherous waves of challenge.
Take care of yourself,
Carol
You've given so much of your life over to caregiving. It's time to turn over the major care to someone else. Like most of us, you jumped into it with love but didn't have any idea of long it would last or how demanding it would become. Please remember that your mom - even if she can't express this now - would never have wanted you to sacrifice everything for her.
Your health may be affected severely if you don't start to consider yourself in your own life.
Take care and please keep us updated.
Carol
Take care, my friends,
Carol
Carol
Thank you🐾